Plush Pumpers and Other Assorted Type 1 Critters

We have made some exciting progress with regards to site changes; Jenna has been agreeable to sites on her upper arms!

We were able to persuade her by explaining that to keep using her pump we need to use other sites. Her bottom is getting tired. If we can't switch sites we'll have to go back to MDI's. That did it. Jenna wants no part of the whole three-needles-a-day club anymore. I told her that she would likely be surprised at how easy she would find insertions on her arm. When it was done Jenna said, "You were right Mommy! It wasn't bad!" She still has no intention of allowing us to do an infusion site on her abdomen. But after today's little art therapy session I have better insight as to why she is so opposed to this. Let me explain...

Earlier this week I was forwarded a link to a site called Haiti Houses. I love this idea of creating little houses out of paper and selling them to raise money for the people of Haiti and thought it would be a good craft project that would also teach my girls a sense of global community, good will and the spirit of giving. Since the devastating earthquake in Haiti I have had numerous conversations with my girls about what happened there. They are aware that people are suffering and they have voiced a desire to help. So I gathered the necessary materials last night after my girls went to bed and began prepping for a crafting session later this week. As I created a little house to serve as an example and inspire my girls, my mind began to ponder other paper crafting possibilities.

And then it came to me.

Jenna has several dolls and stuffed animals that have type 1 diabetes, so she has told me. I thought, why not make these little critters some insulin pumps out of paper! And Jenna can perform site changes on them using an old insertion device from one of her own site changes (sans the needle, of course).

So this morning my girls and I got busy with some colourful card stock, glue, googly eyes (they make the best pump buttons), and some butcher's cord for tubing. It was great fun! We made paper pumps in an array of stunning colours and then matched each pump with the perfect doll or stuffy. Each toy got an infusion site on a different body part:

Lumpy opted for a thigh placement,



Cookie-Pookie got one on her upper arm,



Boo went for the bottom,



And one brave but nameless lion attempted the very first site ever performed on a tail!




And as Jenna was deciding on a site placement for Elmo, I asked her if Elmo was willing to try a tummy site. Jenna told me of course he was.



"Elmo is very brave," she explained. "But I won't be having a tummy site." I asked her why. She told me that the last time she had a site in her tummy she accidentally scraped it against a bar stool in our kitchen as she was trying to get down. It hurt a lot.

So at least now I know why she is so disagreeable to this. I don't know if I would have found this out had it not been for the little art therapy session we were immersed in prompting the dialogue about site changes under non-threatening circumstances.

By the end of our crafting session we had a small army of plush pumpers with pretty paper pumps stuck to them! It was an impressive site, to say the least.

Most days I feel like I'm clumsily fumbling through this whole parenthood thing with the best of intentions but with all too human an approach. But today, I felt rather accomplished.

It felt pretty darn good.

Road Trip

We took a road trip this weekend; many hours of road travel and a couple hours logged on a ferry were involved. A very well stocked first aid kit, about two weeks of diabetes supplies, several changes of clothing and pajamas for myself and the girls, two cameras, two tripods, laptop, and a portable DVD player with about 8 of the kid's favourite shows were among the items crammed into our travel bags, all for a mere overnight stay away from home. And I haven't even mentioned the smaller version of my medicine cabinet I routinely pack for ailments ranging from headache, fever, indigestion and, of course, lactose intolerance.

We were ready for almost anything.

I couldn't help wondering, as I was assembling items and personal belongings prior to leaving, if I would be feeling foolish in a day and a half when I would find myself having to unload a vehicle full of stuff, most of which was completely unnecessary. But as it turned out, this was one trip I would be thankful for my penchant for preparedness.

Jenna experienced her first G.I. bug ever this weekend...at 4 am on Sunday morning...in a hotel room...500 kilometers from home. I have been dreading this inevitable encounter with the barf-bug since her diagnosis. How would it affect her blood sugars? Would she go too low? And if so, how would I treat a low if she isn't able to keep food down? But the question that did NOT occur to me was, what if it happened while we were away from home?

We had been getting up every two hours checking Jenna's blood sugar and bolusing to battle the delayed high from a pasta meal she'd had for supper at a restaurant Saturday evening. I tried in vain to talk her into stuffed mushrooms and soup. But she was set on pasta.

At 4 am Jenna sat up in bed. Mommy my legs are achy and I...*cough*...*barf*...

James and I sprang into action. I stumbled around in the dark trying to find the switch on the lamp between the two queen-sized beds. My mind started racing, trying to trouble shoot the problem. "Get her to the bathroom! Where's the checker?!" I quickly put together a worst case scenario in my head. Achy legs...vomitting...she's probably sky high complete with ketones because of that damned pasta. Or maybe her site went for a crap sometime in the night and she's been going without her basal--maybe even missed a correction. I checked her and braced myself for what I was sure would be an astoundingly high reading. But it was only 14. Definitely out of range but not nearly as high as I was expecting. A correction was given. I decided to check for ketones anyway just to be safe. No ketones. No fever. And Jenna reported feeling better after she vomited. So we cautiously settled her back to bed (after some necessary house keeping duties were performed) and hoped for the best.

But she vomited twice more after that requiring a total of three pajama changes.

We decide to ditch our plans for that day, admit defeat and book it home. At 7 am we packed up the vehicle and our two sleepy babes and that's precisely what we did. Thankfully, Jenna didn't have any further bouts of vomiting and she never developed a fever. Her blood sugars ran a little high for the first couple of hours of travel but eventually settled softly into the normal range. It was a very brief session of gastric upset that initially had me worried but was quick to run its course.

By the time we got home seven hours later Jenna was her usual self, albeit tired and in need of a bath, comfy jammies and a home-cooked meal. When we parked the vehicle in our driveway I reached over to unbuckle her belt. She looked at me and with a beautiful, contented smile on her face and said, "Well, that was an adventure."

That's my girl.

The Sadly Misinformed and The Dangerously Uneducated

I get somewhat annoyed with the ignorance that is everywhere with regards to type 1 diabetes. If you are reading this because you or someone near and dear to you has type 1 diabetes then you know what I’m talking about.

I’ve been relatively lucky so far; since my daughter’s diagnosis nearly two years ago I've only had a handful of uneducated people reveal their ignorance to me with ridiculous statements that they attempt to pass off as firsthand knowledge because an elderly relative of theirs has (or had) diabetes. Let’s face it; chances are their experience is with type 2 diabetes. But they claim to know “all about diabetes” because of this feeble link they have to a disease that is vastly different from type 1 diabetes. If they really do know so much about the disease my daughter has and will have for the rest of her life, barring a cure, why on earth do they say such oblivious remarks as, “So is your little girl diet-controlled?” And why, when I answer their questions about how often I check Jenna’s blood sugar with “...usually six to ten times a day,” does their jaw drop to the floor?

So I guess I could cut these people a little slack. Obviously there is a huge information vacuum out there with regards to type 1 diabetes. It truly is a disease that you can’t possibly know everything about unless you have had some extensive firsthand experience with it. So what this really says is that we have a lot of work to do educating the public. But that excuse doesn’t hold water when it comes to medical professionals.

A pediatrician once doubted that a quarter unit of insulin would have any real effect on my then two year old daughter’s blood sugar. This doc actually scoffed when she looked at my dosing record! I believe her statement went something like this: Do you really think a quarter of a unit does anything? Hind sight has me wondering why I didn't counter her query with: Do you really think they would have bothered manufacturing insulin pumps touting the ability to deliver a basal rate as low as 0.025 units per hour if it were that insignificant?

A GP once told me with obnoxiously arrogant certainty that illness has no effect on my daughter’s blood sugar. I was in such disbelief that I wasn’t sure I heard him correctly. How can people trained in the medical arts be so misinformed? How is that possible? Am I alone in feeling somewhat unnerved by this?

This is unacceptable. I think we all have an obligation to our loved ones with type 1 diabetes to spread some much, much needed knowledge. Evidently, we have our work cut out for us!

Site Changes Suck!

As parents we go to great lengths to ensure our children are safe-- that they avoid injury or anything that could cause them pain or discomfort. It’s instinctive. So when a parent of a child with diabetes has to inflict physical discomfort on their child to keep them safe it is an experience of true paradox, especially when the child is very young and doesn't have the rational understanding of why the uncomfortable procedure is required.

Every three days my husband and I are required to change Jenna’s infusion site. This is a process that, under calm and cooperative circumstances should only take 5 or 6 minutes to perform. However, lately this is a much larger undertaking requiring a great deal more time to plan and execute.

Jenna has become very fearful of the site change over the past several months. I used to be able to carry out a site change by myself with no assistance from my husband. Jenna would willingly lie down on her tummy in the living room with her cute little rump exposed, ready for the new infusion set to be inserted (and with the promise of three or four jelly beans upon its completion.) All that has changed.

Now Jenna tries desperately to muster the courage to be a willing participant in this necessary evil. I watch her face as she tries to show a stiff upper lip. While her daddy and I assemble the paraphernalia required to perform the task I observe her talking to herself under her breath dealing with her own conflicted emotions—I don’t want to...you have to. I see her efforts to buck up when she gets to the point of lying down on the floor, only to lose her nerve and flee at the last moment as I’m wiping the area with an alcohol swab. And it kills me. To watch my three year old little girl having to dig so very deep for courage destroys and exhausts me.

It’s to the point where my husband and I have to accomplish site changes when we are both home so that James can hold (restrain) Jenna while I insert the infusion set. I don’t know how either of us will manage if we have to do an emergency site change when one of us isn’t home. And we are unable to convince Jenna to have a site in another area of her body. Her abdomen is an area we would very much like to take advantage of. But Jenna is strongly opposed, even though she has had a couple of sites changes there in the past.

Jenna had a site go very bad a couple of weeks ago and I knew this was a sign that her posterior is getting weary. We so badly need to explore other areas. Out of desperation, during our last site change James and I decided we would restrain her and attempt an abdominal insertion. But her screaming, crying, begging and pleading forced me to suddenly abort the mission. I just couldn't do it. It felt so wrong. It was, indeed, one of the most horrible experiences my heart has had to endure--to cause my child such trauma. No parent should have to experience the gut-wrenching hell of having to restrain their child while they kick, scream, cry, beg and plead for you not to do something that causes them emotional and physical distress but is necessary for their very survival.

I’m not quite sure what to do at this point. I don’t like making candy a reward but I feel some sort of reward needs to be offered. So if anyone has any ideas, tricks or methods that seem to work I’m open to suggestions...anything. Please.

Jenna's Journey

I spoke to my niece this morning. She is preparing a speech to present to her class and has decided to speak about diabetes. I answered a few of her questions but found myself delivering somewhat of an impromptu speech to her over the phone. I think I view this as an opportunity to educate some young minds and dispel some myths and misconceptions regarding type 1 diabetes. I may have rambled a little. But she listened, took notes and followed up my answers to her questions with still more excellent questions.

I offered her the use of a video I put together about one year ago. It's a video that had been rattling around in my head since not long after Jenna's diagnosis.

For some strange reason, amid the emotional anguish and uncertainty on that fateful day of Jenna's diagnosis, it occurred to me to take my camera with me to the hospital when we took Jenna in. To this day I'm not entirely sure why or how I thought to do this given the situation. But I'm so glad I did. It enabled me to document in pictures Jenna's initial days as a person with type 1 diabetes. I decided to attempt to compose a video with those photos, mixed with a few others I had on my hard drive to mark 'before and 'after' diagnosis. I just needed the perfect song.

Then one day, as I was loading the kids in the car to take my oldest daughter to school, I popped in a Cd. It was the sound track to the movie "Into The Wild". The first song I skipped to was "Rise". The lyrics went straight to my core and made me say out loud, that's the song.

I'm not certain if my niece will be able to use the video but I thought I'd provide her with as much information as possible to cover both the physical and emotional aspects of this disease.

I hope she knows how very proud I am that she chose diabetes for her speech topic. I know she will deliver a beautiful speech. I know she will do us all proud!

There goes my hero

I'm just not the kind of person who can commit to blogging everyday, apparently. It's just not going to happen, no matter how much I want to. I wish I could, but motherhood and the many demands of my daily life trump my desire to blog on a regular basis right now. So for now I'm going to have to forgive myself for my infrequent, sporadic blog posts. I'll write when the mood strikes me.

And tonight the mood has indeed struck.

It's been a crazy day, blood sugar wise. Jenna started the day with an eleven before her breakfast of Special K, milk, poached egg on toast and a dish of blueberries. Eleven is certainly higher than I like to see her waking number but not outrageous. I promptly bolused her for the high and for her breakfast prior to her eating it and assumed when I checked her again before her gymnastics class two hours later that she would be closer to her target of seven.

Morning snack. A half a banana. A pre-meal check revealed a jaw-dropping 22. I wiped her finger with a wet cloth and retested thinking something must be wrong; some sugar on her finger must have spoiled the test. The second reading came in at a solid 20~ two points lower, but at that level WHAT DOES IT MATTER? She was still screaming high. Why?

Off we went to her hour long gymnastics class and I told Jenna that if she doesn't feel well she can tell her instructor that she wants to take a break. With 15 minutes left of the class I watched Jenna as she ran out of steam and slumped over a mat then looked up at me in the observation area and mouthed that she was tired. I ran down to the floor and asked her if she was OK. She said she was tired and needed a break. I took her back upstairs to sit with me and do another check. Again I assumed she was likely still high but must be coming down by now, especially after 45 minutes of activity. Another 20 slapped me across the face and made me want to yell, WHAT THE F#@*! I didn't though. Instead I slipped into quiet despair and decided that a site change must be done prior to lunch.

The remainder of the day consisted of more mid-teen blood sugars and of me asking like a broken record if she was feeling okay. She never once lost patience with me though. Often she becomes annoyed with me when I repeatedly ask for an update of her physical status. But today she simply answered, "I feel good, Mom." No annoyance or exasperation.

Finally at bedtime Jenna's blood sugar does an about-face and comes in at three. While I was relieved to see it return from its lunar escapade, I was frustrated with its sudden drop.

I feel so toyed with. So taunted. And yet what has me the most irate is imagining what this does to Jenna's little body. What must such erratic blood sugars do to a person? And yet she just forges ahead, like most kids do. She just adapts with no real conscious awareness of the physical effects this glycemic-mania has on her. She pushes through. She is a survivor...tough as nails.

She is my hero.

What NOT to Say About My Kid

Jenna routinely sees a physician about once every three months as part of her diabetes management. These are mainly just check-ups during which her log numbers are reviewed as well as her current pump settings. Diet issues, if any, are discussed and a HgA1c is done. The majority of these appointments have been with pediatricians. Twice a year we see her endocrinologist. This is likely the same routine most diabetics follow~ at least type 1, pediatric diabetics.

About six months ago a new diabetic clinic was set up at our local hospital with new funding obtained from the government. The clinic was staffed with a Diabetes Nurse Educator, a dietician and two pediatricians who, I was told, have considerable experience with type 1 diabetes. This meant that the original pediatrician, the one who saw us in the emergency department for Jenna's initial diagnosis, would no longer be Jenna's attending. A new pediatrician was to take over Jenna's care.

Our last appointment nearly two weeks ago was the second one we have had with this new doctor. Prior to actually seeing the doc, our nurse took us to perform the standard, preliminary height and weight check. It was noted that Jenna is tall for her age (something she gets exclusively from her 6'4" father), growing one inch since May and has gained 1 pound since her previous appointment; all good things. We then sat in a conference room with our nurse, the dietitian and an observing pharmacy student, having, in effect, a care conference on Jenna. Her log book was reviewed and the usual praise for how well we are doing was received from our nurse. The dietitian asked if we had any questions or concerns with regards to diet and carb counting. I explained, as I usually do, that I have a good handle on Jenna's diet and how to carb count and that the only thing I am working to perfect is how to handle fatty meals as they tend to creep up on Jenna long after the meal is consumed. I explained that as a result of this, I seldom provide meals containing excessive amounts of fat as it is a)healthier to eat a low fat diet and b)easier on Jenna and us to keep the fat down and not to have to check her multiple times in the night to battle a stubborn, delayed high.

During this portion of the appointment opportunities are presented to discuss concerns and praise is offered to reinforce our efforts and hard work for maintaining good control over Jenna's blood sugars. Compliments regarding how polite and lovely our girls are are expressed and graciously received. In summary, I am given the pat on the back I don't know I need until I get it. It's hard work trying to stay one step ahead of this disease 24/7, especially when virtually all of the leg work is up to myself and my husband to perform. Jenna, being only three, doesn't do much yet with regards to the daily tasks of managing her diabetes. Oh, she can get out a test strip (often popping the cap and flinging all the strips unceremoniously hither and yon for me to have to pick up) and insert the strip into the meter. She can even prepare the lancing device and press the OK button to administer a bolus. And occasionally she can recognize a low for what it is and sound the alarm. But that's about the extent of her involvement. So these "Sunshine-Up-The-Butt" appointments are a bit like gas in the tank for me.

Enter our new pediatrician; a woman probably no more than ten years older than I with a stressed expression on her face. She flips through Jenna's log book, making a comment about how all the numbers make her head swim. This doesn't exactly instill confidence in me regarding her abilities to interpret log data. She then leaves the room while our nurse takes us to an examination room where the good doctor, we are told, will join us again momentarily. Within a couple of minutes the doc arrives once again on the scene. By this time we have been in the clinic for over an hour and my girls are feeling a little restless. Jenna amuses herself by repeatedly sitting up and lying down on the examination table enjoying the crinkly noise of the white paper that covers it. This was an obvious source of annoyance to the doctor and she showed her impatience by asking Jenna to stop, making some mention of her coffee not having kicked in yet. Not necessarily the worst thing in the world, but it was a little odd. Not long after, she reprimanded my oldest daughter when she pushed herself up on the counter in the exam room to get a paper towel from the dispenser which was otherwise out of her reach so that she might wipe her hands. Again, this isn't necessarily jaw-dropping, but at this point I'm wondering why this doctor got into pediatrics if she doesn't have patience for children displaying normal, child-like behaviour.

She then conducted a brief physical examination of Jenna. Sensing her shortness, James suggested that he take our girls back out to the play area when it seemed she no longer required Jenna's presence, while I wrappped things up with the doctor. When it was just myself and the doctor present, she offered up some half-hearted praise while she looked at papers in Jenna's chart. Then, upon spotting Jenna's documented weight, punctuated her token approval with "...she's a little chunky..."

I stared at her unsure, at first, of how to respond and in disbelief that a professional would use such a term to describe anyone, let alone a three year old little girl that is tall for her age and to anyone with eyes, most definitely NOT chunky. She had just performed a physical exam! She palpated her little abdomen! She must have noticed the absence of "chunk"!

And I became angry.

"Are you implying that my child has a weight problem? Because I may have to get my back up!" was my initial response.

She must have sensed that she had awakened a ferocious beast because she began dishing out compliments in an effort to put out the fire she so recklessly started.

"She's doing fine. I'm just saying that we should be alerted to a possible weight problem. Don't worry." she replied as if that would make me feel less offended.

"I'm not the least bit worried. I can't believe that you would say such a thing about a toddler who is still in the process of shedding baby fat and who is already at greater risk of developing an unhealthy relationship with food and a distorted self image by virtue of the fact that she has diabetes; not to mention the fact that she is a female who will enter into a society that has cruel and unrealistic standards of what is considered beautiful. With such disorders as diabulimia and anorexia plaguing young women with diabetes, I'm disappointed that you would be so careless."

More compliments and praise were expelled like so much water on a blazing inferno. But it was too late. I had already made up my mind that this would be the last time we would see this physician. And when she asked me if I was attempting to offer Jenna a low fat diet, I was incredulous and explained that if she had been present for the meeting with the nurse and the dietitian she would realize how ridiculous that question was. She quickly withdrew it.

I spent the rest of the afternoon trying to quell repeated surges of anger each time I recalled what she said in my mind, telling myself to just let it go.

Diabetes is just as much a physical disease as it is a psychological one. This disorder can play havoc with one's head. I am making every attempt to raise healthy, happy, self-confident, well adjusted little girls. I want to surround Jenna with kind, sensitive health care professionals who aren't going to bring their shitty personal crap to work with them. I'll be damned if I am going to take the chance that some thoughtless, short-on-patience, fat-phobic doctor will make a stupid, careless remark with regards to my child's body that would sabotage my efforts to meet that end. Because the next time this doc decides to let her lack of sleep, patience or tact get the better of her, Jenna might still be in the room.

"Doctor... you're fired."