D-Mom Blog

The sweet life with a diabetic child

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Kids First, Diabetes Second Book: Rufus…and Choices

Summary: After all these years, Rufus the Bear with Diabetes still holds a special place in Q’s heart. Though other stuffed animals from her younger days have been boxed up, Rufus still has a place on her shelf. Rufus and the book which tells his story helped us get through a really tough week when Q had had enough and didn’t want injections. At the end of this excerpt is a little advice about giving choices.

Rufus the Bear with Diabetes

A Bear Named Rufus

Rufus the bear with diabetes

I am not saying that it was all sunshine and roses in those first few months. Our child was three years old after all, which presents its own set of challenges. Sometimes her appetite was bigger than expected, so we had to give her injections after a meal. Though she was initially compliant to getting her blood sugar checked and receiving four injections a day, there came a time that summer when she decided that she had had enough, and there was absolutely no way I was going to give her another shot.

For about a week, I had a struggle on my hands. Some days, I had to leave work to give her an injection if she wouldn’t let my mom do it. I didn’t want to hold her down and force her, but she needed these injections to live. I didn’t want her injections to be dramatic and traumatic, but nothing I could say would stop her crying, screaming, and kicking as I came toward her with needle in hand. Luckily, a package arrived in the mail that week that contained the Bag of Hope we had requested from the Juvenile Diabetes Research Foundation (JDRF). Inside was a little bear named Rufus and a book. I read her the story. I let her check Rufus’s blood sugar and give him an injection. And then she let me give her hers.

It was serendipity that he arrived right when we needed a way to get past this obstacle, and I’ll always be thankful for that.

A bit of advice that we were given by one of the nurses in the hospital about caring for a young child with diabetes is to give a choice where there is a choice to be given, but that not taking care of diabetes is never a choice. In other words, ask your child which finger he or she would like to use for a blood glucose check. But checking the blood sugar is not a choice, it’s a given. Ask them where they would like the injection this time. But getting the injection is not a choice, it’s a given. And if a bandage makes a child feel better after a blood sugar check or shot, offer a choice of those, too. Diabetes is a fact of your child’s life now. Your child may feel that control has been taken away, so it’s important to give children some choices to make them feel like they still have some independence and say-so.

Kids First Diabetes Second Book

Learn More

If you’d like to learn more about the book, you can read more on the Kids First, Diabetes Second book page. It’s available widely in print and as an eBook from book sellers such as Barnes & Noble, Amazon.com, and IndieBound. And if you do read it and find it to be a valuable resource, I would greatly appreciate if you could write a review on any of the online retail sites. Thanks!

Disclosure: This post contains affiliate links to booksellers.

Please remember that I never give medical advice. Ask your endocrinologist or pediatrician for advice about your own child. Make your own informed decisions for your own child.

 

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{Our Story} Blood Draw

At our endo appointment over the summer, we were told that Q needed blood work for her thyroid and cholesterol levels. Since she had her yearly physical scheduled within a month, she said that we could wait and have the blood draw at our local lab in case our pediatrician wanted any additional tests.

Q was not looking forward to having her blood drawn.

I personally don’t mind having my blood drawn. Sure, it’s a nuisance, but it’s really not a big deal. You go, you do it, and you get on with your life.

But tell that to a child.

The last time she had to have her blood drawn she screamed and cried and wouldn’t sit down. We were almost at the point of restraining her when a bribe of six stickers and six lollipops convinced her to get it over with.

Not looking forward to that again!

When we arrived for testing there was an over half hour wait. Thanks. Thanks a lot. That was plenty of time for her to get nervous.

When we entered the room she started to get worked up.

I said, “Q the first step is just sitting in the chair. Sit down while they get everything ready. I promise they aren’t going to do anything yet. Just sit there and relax.”

She eased her way into the chair and asked if Rufus could also get his blood drawn. I suggested Rufus get his blood drawn after Q, hopefully as an incentive.

The tech grabbed a helper so that they could work in tandem to expedite the process. They decided that instead of filling the three vials individually, that they would fill a big syringe and transfer it. Good idea.

I said, “The more relaxed you are, the less it hurts. Sit there nice and still and it will only be a pinch.”

When it was time I told Q to look at me. I held her head in my hands so that she wouldn’t look down at the needle. I repeated, “Look right at me, Q. Look right at me.”

And it was over relatively quickly. No big deal.

Though she did say it hurt a little more than I said it would.

Next it was Rufus’s turn. The tech readied the supplies and helped Q go through the steps on her bear. She told him that he did a good job as she bandaged him up with a folded square of gauze and stretchy tape.

We proceeded to the hallway where she selected a sticker and to her delight was given four of the same theme.

Because this was fasting blood work, we headed to our favorite breakfast spot to share an order of scrambled eggs, fried potatoes, and blueberry pancakes. Q also ordered a bowl of fresh strawberries with whipped cream and a side of bacon.

We are glad to have that behind us, but she’s already asking if we can wait two years until she has to do it again!

Blood Draw
Blood Draw
Blood Draw
Blood Draw

All images are copyright D-Mom Blog and D-Mom Media and may not be copied or reproduced without express written permission.

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{Our Story} Why Brian Needs a Pump

Rufus With Insulin Pump

Rufus in the car wearing his own insulin pump.

 

One recent night Q grabbed the book Rufus Comes Home to read together at bedtime. I took the opportunity to talk with her a little about her diagnosis, wondering if she could still remember any of the details or if they were fading away in the three years since.

When we got to the end of the book (I always skip a few of the last sentences because Q doesn’t need to hear about the mother’s burden), I ended with the line about everything being all right.

I asked Q if everything is all right, to which she replied “yes.” But she continued:

I sure hope that Brian gets an insulin pump soon. Then he’d only have to have a shot every three days. And in kid time, three days is a long time!

When Q got an insulin pump, I can’t say we really gave her a choice in the matter. After talking in person with Kerri and Allison over that summer I thought that it was the right choice from a caregiver’s perspective and that it would also give her some more freedom. I was never 100% sure it was the right decision, but I felt like it was the best decision given the knowledge I had at the time.

Seeing a video of Caleb jumping into a swimming pool sealed the deal for me. What freedom!

The week of the saline trial was taxing to say the least. You do twice the work with none of the benefits! If you’ve done a saline trial before, you know what I mean. You have to act as if you are actually using the insulin pump, figuring out boluses and corrections, giving saline as if it was insulin, writing down every single thing to document the week so that the pump trainer or endo can confirm that yes, you are indeed capable of operating the thing…and all the while you are doing double duty because you have to actually give your child injections with real insulin.

Like I said, twice the work, half the fun.

But at the end of the week as I was packing up the PDM and paperwork to send back to the CDE and give her the thumbs up or thumbs down, Q said she wanted to let the nurse know her thoughts too.

Insulin Pump Letter
Q’s letter to let them know that she loves the pump.

Without a doubt I can say that we made the best decision possible for our family and for Q. It’s been over two years on the pump, and though we sometimes have to troubleshoot, change a pod early, or deal with a post-pump change high, it provides so much more freedom.

All images are copyright D-Mom Blog and D-Mom Media and may not be copied or reproduced without express written permission.

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Sophia Goes to the Endocrinologist

American Girl Doll

Image courtesy www.americangirl.com

The Christmas Gift

One weekend my mother, my daughter, and I headed to Chicago to spend the day. Her grandmother had wanted to buy her an American Girl doll for her Christmas present.

When Q came to the case of 20 or so Just Like Me dolls, she quickly picked out the one that she thought looked, well, just like her.

That night as she and the doll sat on the couch in their matching pajamas, ready for bed, Q said about her new doll she named Sophia:

She looks just like me.
She’s a super hero just like me.
She’s fast and strong just like me.
She has diabetes just like me.

Since then, Sophia, along with Rufus and her super hero bear, have been subjected to countless blood sugar checks, injections, and check ups at home.

The Doctor Visit

As we packed for our most recent trip to the endocrinologist (remember it’s 200 miles each way!), she said it was important for Sophia to come along. After all, she has diabetes and needs to see the doctor, too.

After the nurse took a big drop of blood for the A1c test and measured Q’s height and weight, she did the same for Sophia.

After the nurse took Q’s blood pressure and listened to her heartbeat, she did the same for Sophia.

When the doctor came in she asked if her doll was here for an appointment too. Q responded by saying that Sophia has diabetes this week. Sometimes she has diabetes, but sometimes she doesn’t.

After the doctor gave Q the once-over, Sophia got a once-over, too.

Role Play

I think it’s important for younger children to role play and have dolls or stuffed animals that have diabetes too. It’s true that children need someone to identify with since the majority of their friends do not have diabetes (thankfully).

When we upgrade meters, I give her the old one. I give her empty test strip vials and the old insulin pens. Her diabetes supply bag for her dolls includes logbooks. The animals get once overs with the real stethoscope that the nurses kindly gave her in the hospital at diagnosis.

She helps manage their diabetes.

If your newly diagnosed child has not received the Bag of Hope which includes Rufus, request one right away. You only have three months.

All images are copyright D-Mom Blog and D-Mom Media and may not be copied or reproduced without express written permission.

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{Newly Diagnosed} Bag of Hope

When our daughter was diagnosed, we were told by the nurses to contact the JDRF for a teddy bear. At the time I was thinking that it would have been even better had she been given a special present while actually in the hospital.

As we settled in back home, I eventually e-mailed our state’s JDRF chapter to request our Bag of Hope. They mailed it with lightening speed and I think we received it two days later.

And that was a good thing.

Q had been pretty compliant about finger checks and injections up until that point. But all of a sudden, about a month out from diagnosis, she decided she just was not having it any more.

Injections were accompanied by screaming and tears and threats from me that she could do it the easy way or the hard way. I had to demand that she could sit still or I could hold her down because the only choice was to make it quick or drag it out. But there was no choice whether or not to get an injection.

This rebellion made for a difficult few days. I don’t blame her. She was four and had every right to be fed up. But I didn’t know what to do to get over this hump.

And then Rufus arrived, as if summoned by her D-Fairy God Mother.

We read the book about the little boy who was diagnosed with diabetes and his special bear. And then we practiced checking Rufus’ finger and giving him an injection.

And it worked!

No more struggles. No more tears. No more screaming. No more trying to get away from the needle that was coming toward her.

She still plays with Rufus, occasionally wanting to do his finger check or give him an injection. She doctors him up when he is feeling sick. She’s repaired broken limbs and covered him in countless Band-Aids.

And when we were thinking about starting an insulin pump, she hooked Rufus up with one, too.

JDRF Bag of Hope

JDRF Bag of Hope Including the Famous Rufus the Bear with Diabetes

So if your child is newly diagnosed or you know someone who is, encourage them to contact their JDRF chapter and request the Bag of Hope. It really can help.

If your child has been recently diagnosed, visit my Newly Diagnosed page for more resources. Read more posts about the Bag of Hope and Rufus the Bear with Diabetes.

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{Meet a D-Mom} Leighann of D-Mom Blog (Me!)

D-Mom Blog Featured D-Mom
Getting a diagnosis of Type 1 diabetes in your child can be very isolating. I know that as we sat in the hospital room 200 miles from home I wrote a blog post about what was happening. I never hit publish.

On the one hand I wanted to reach out for support from my peers, but my “peers” in the online world at the time were not parents of diabetic children. I didn’t want sympathy in those first days, but I needed someone to say they had been there and that we would make it through.

On the other hand, blogging had always been my space where my children were anonymous. I grappled with whether it was my place to tell my daughter’s story.

After all, it is her story to tell.

It wasn’t until about three months later when we had settled into a rhythm of diabetes management and I felt like we were in control (as we’d ever be) that I sat down and wrote my first post about her diagnosis on my personal blog. That first narrative, Mother’s Intuition, resounded with many parents and I received countless words of encouragement as my online community told me how they, too, are affected by diabetes.

In the following months our story unfolded and I began reading blogs written by adults with Type 1 diabetes (Six Until Me, Diabetes Mine, Lemonade Life). In the comments of these well-read and well-written blogs I began finding other parents dealing with diabetes as we are. Soon I formed a network of moms who I could e-mail or Tweet and who would respond with answers, any time of the day or night.

I want to introduce you to these parents who are champions for their kids. They are nurses, mathematicians, counselors, cooks…and I haven’t even begun describing their paid jobs!

Each Monday I hope to highlight a parent of a diabetic child, a parent who has put pen to paper (or fingers to keyboard) to share, vent, learn, and laugh on this journey.

I thought it only fair that I first answer the questions that I will be asking of others. So this week you get me!

If you would like to be a featured parent writer on “Meet a D-Mom Monday,” please let me know.

Grab a cup of Diet Swiss Miss Hot Cocoa (only 4 grams of carbs, you know) and get to know me.

I’d like to introduce you to Leighann of D-Mom Blog (me).

Tell me something about your child.

Q is one of the most outgoing people I have ever met. A teacher recently said to me, “Q has never met a stranger.” It’s true; she makes friends everywhere she goes.

She’s very theatrical, taking center stage in our living room each night, where she sings, dances, and acts. She has been taking dance classes since the age of two, including ballet, jazz, tap, and hip hop. Right now she’s in her second year of musical theater which suits her well.

She’s constantly at the table working on projects: drawing, painting, writing, cutting. She’s a creative child.

She is the proud big sister to her brother R.

How old was your child when diagnosed?

She was three, just a few months shy of turning four.

How was your child diagnosed?

Q had been sick with a typical virus and just never seemed to completely rebound. When she returned to school everyone commented that she had a growth spurt while she was out. In reflection she had lost weight: 5% of her body weight!

She was thirsty all the time, frequently getting out of bed and asking for milk, something she had never done before. If we denied her a drink, she began crying.

I thought she was “off.” She just wasn’t herself. She was moody over little things. Diabetes was in the back of my mind, but I kept thinking she would rebound.

And then she drank an entire half gallon of milk in one day. I called the pediatrician who said no child should drink that much milk in a day. I dropped off a urine sample the next morning and by that next evening we were in St. Louis being treated.

My post Mother’s Intuition tells the whole story.

How has your child’s life changed since diagnosis?

I wish I could say that her life is better because of it. When you are in the thick of it, it’s hard to see positive outcomes.

I could list all the negatives, each and every one of them.

I can say that diabetes has not taken away her positive outlook, nor dampened her outgoing personality.

What amazes me again and again is how she can take a negative, like our 400 mile round trips to the endocrinologist, and turn it into a fun adventure. The long trips suck, but we try to fit in some fun when we go.

How has your family’s life changed since diagnosis?

I have seen a counselor…need I say more? I think all marriages/families are hectic and busy, but our daughter’s diagnosis just added another stress level. Diabetes is constant and in-your-face and you never get a vacation from it.

A diagnosis like diabetes can be considered a traumatic life event and you need to go through the stages of grieving and loss. I think I have skipped over a few of the stages!

How has connecting online helped you cope with diabetes? What online resources do you use?

It took me a long time to open up and talk about it to others. I tend not to talk about the details in my daily life, but writing online has helped me to get some of it out.

Right away I found some blogs written by PWD’s. It was good to see young adults who seemed to have themselves together. It made me realize that my daughter can grow up and have a normal life.

It has been good to write about our experience, but connecting with other D-Moms on blogs and Twitter in the last six months has helped me tremendously. When we were researching pumps, I turned to these moms for real answers and good advice, rather than relying on slick brochures from the companies.

It’s good just to have people who know what you are facing and who can sympathize with you.

How do you manage diabetes?

We did multiple daily injections for the first year and a half: three mealtime injections of fast-acting insulin, plus long-lasting insulin at bedtime. The strict schedule was grueling and inflexible.

This fall we switched to the OmniPod insulin pump. I am amazed at how much less stuff we have to carry around now.

We routinely test her blood sugars 4-6 times a day. I hear of other parents who check 8-10 times, including 2 am, and I realize how frazzled we would be if we checked that often. Of course we check more frequently when needed.

We haven’t started thinking about a continuous glucose monitor (CGM) yet, and I am not sure that we will any time soon. If it becomes integrated with our current pump, then we will definitely look into it.

What would you tell parents of a newly diagnosed child?

I would tell parents that your child can and will thrive.

I would also say “You can do this.” I was sort of amazed that after a few days and a few classes that the doctors would entrust us with our daughter’s care. When we were taught about hypoglycemia it really hit me hard that my daughter could have seizures from extreme hypoglycemia and it was my job to get her through it.

It was overwhelming leaving the hospital and beginning our 200 mile drive home to start the rest of her life: a life with diabetes.

But you become an instant expert and you figure it out.

Though she was very compliant by the end of our hospital stay, she has had moments that she doesn’t want anything to do with injections or a pod change. Some of the best advice that the nurses gave is to give choices when there is a choice (which finger to check, what kind of bandage, where to get the injection), but that getting insulin is not a choice. It must be done.

Rufus got us through a rough patch. Sticker charts help. We currently are working toward 30 pod changes, at the end of which she’ll get some new art supplies.

What do you know now that you wish you had known at diagnosis?

I wish I had allowed myself to grieve. I went into “mom mode” and took care of business. I felt like I had to be strong for her. I think it took a long time for it to sink in. And it still hits me hard now and then.

At the time we only knew one other diabetic child. She lights up when she meets other diabetic children. I wish we had found more peers for her right away.

If you are brand new to D-Mom Blog, please read my Welcome, published on January 1, 2010, to learn more of what this website offers.