Pros and Cons of the Continuous Glucose Monitor

CONTINUOUS GLUCOSE MONITOR

It took a long time, a REALLY long time, for our insurance to cover the Continuous Glucose Monitor (CGM) for Sawyer. 

We've had it now for two months, and here are my thoughts on it so far.

Pros

* You can track blood sugar trends throughout the day.

* There are alarms that can be set for various situations, such as extreme lows, highs, or dropping fast.

* During sports, Sawyer could see his blood sugar and trends at a glance.

* Finger pricks only twice a day.

* Sensor change only once a week.

Cons

* It had to be calibrated twice a day. Failure to do so resulted in false readings.

*The sensor and transmitter came off during swimming and other activities.

* The sensor made the skin of his epidermis and dermis itch the entire week he wore it. 

* The alarms go off a lot. Sawyer silenced them because he didn't like the attention in class. Even when we changed the settings to only two alarms, he would set them on vibrate to avoid embarrassment.

* After one of the sensor changes, the monitor stopped receiving readings after one day. 

*Removing the transmitter from the sensor was very difficult.

*We received error messages of not being able to receive transmissions for half an hour.

*We received messages of the transmitter not working and rebooting, which would take two hours to warm-up.

*The cost. (When a sensor or transmitter fails, it's not cost effective to change it until the following week, leaving one without readings until that time.)

Sawyer is currently at camp. The meter wasn't working and it wasn't cost effective to change out the sensor mid-week.

It would have been nice to have the CGM for camp to monitor his BG during all the activity in which he'll be participating.

The CGM is a HUGE advancement in diabetes self management. Depending on the brand you get, the results will vary. 

For us, the monitor worked well during school sports season. For his field trip, it was not always accurate. And for a fun birthday party with other very active teenage boys, it was a flop.

Have you tried a CGM? 

Are you planning to in the future?

What were your results?

Over 3,000 walkers showed their support at the annual JDRF One Walk in Buffalo
(PHOTO CREDIT WIVB NEWS)

WALKING FOR A CURE

JDRF ONE WALK

My family participated in the JDRF One Walk on Sunday for the first time. There was a great turnout of walkers, along with supporters and sponsors of those who would walk. 

I've never been involved in an organized event of this size. 
It was a great way to connect with other parents of children with Type One Diabetes (T1D). 
It was also a great way for children with T1D to have fun while feeling loved and supported by the community.

The walk was held at Delaware Park in Buffalo on June 10. This was my first time visiting this beautiful park. The atmosphere was family friendly. 

After the event, all walkers were welcome to visit the Buffalo Zoo at no admission cost. (More love and support from the community here 💙)

Our team raised almost $6,000 of the region's total donations of 
$642,946!!

Way to go team!!

That's our team!!! Way to go!!

It was a well organized event, all coordinated by volunteers.

Nothing like the heart of a volunteer. 💙

JDRF is the leading global organization funding type 1 diabetes (T1D) research, according to Guidestar.org. The mission of JDRF is to accelerate life-changing breakthroughs to cure, prevent, and treat T1D and its complications. 

JDRF seeks to turn Type One into Type None.

Cutting the ribbon to kick off the One Walk.
Photo Credit WIVB News

" Innovations driven by JDRF, such as artificial pancreas systems, treatments for T1D complications, encapsulated beta cells, and prevention therapies are beginning to advance beyond the lab. These advances have the potential to transform the lives of people with T1D and ultimately bring about a world without T1D" (https://www.guidestar.org/profile/23-1907729).

I hope to see the development and world wide distribution of the artificial pancreas for my son and other brave people struggling with the daily balancing act that is T1D.

That's my dream.

That's why we walk.

Championing for those living with T1D

My son and I want to thank our generous sponsors and all of
those who donated to the JDRF One Walk 💗

More information on JDRF  (Juvenile Diabetes Research Foundation) and the annual One Walk can be found on their Web site at WALK.JDRF.ORG

More Resources: http://www.jdrf.org

http://www.diabetes.org/diabetes-basics/type-1/?loc=db-slabnav

To Pump or not to Pump

Making the choice to use an insulin pump is a personal one. There are a lot of factors involved in deciding if and when a pump will work for your child.

For me, the choice to wait was due large in part to my son's impulsive nature. I was concerned he would treat the pump like a video game and press buttons that could deliver insulin when it wasn't needed.

I didn't know there were pumps with safeguards in place. The one we chose has a three button system to turn it on. It's a requirement of the FDA, a good one. 

After 5 years with type 1 diabetes, we made the call to get the process started. 

First, the doctor gave us brochures to look over and pick the pump that we wanted. Since my son is now twelve, I included him in that process. He is the one that has to acclimate to using it and I wanted him to select a pump that he'd be comfortable with. There are a few out there, and my son's doctor told us it was our choice. 

Insurance companies generally want to see blood sugar logs. Ours wanted to see 2 months worth. Some want three. We keep logs of all his sugars and insulin doses, so fortunately we were prepared. 

bookcoverimgs.com

The process went quickly. Within a few weeks, my son was connected. What we didn't expect was the dramatic change in his blood sugars.

He has adapted quickly to the pump...much more quickly than I could have imagined.  It clips to his belt or he tucks it inside his pocket. Every 2-3 days, we change the cartridge and the infusion site. 

reviewsmemo.com

I expect to see a lower A1C at his next check-up. With that, a lowered risk of diabetic side effects.

The decision of whether to pump or not to pump is an individual choice. It was definitely one that we took time to consider before making the transition. 

We're optimistic, so far, that the results will be worth it.

A Wonderful Week

It was a wonderful week, visiting with Jolene Philo and discussing her new book, Different Dream Parenting.

I want to thank Jolene for stopping by and sharing some of her time with us. She has had plenty of experience raising a special needs child. And she was gracious enough to stop by and share her knowledge with all of us.

Thank you to those of you who stopped by and left a comment. 

And...

Congratulations to Kathleen Maher for winning a copy of Jolene's new book. 

It's a busy season, and I apologize beforehand for the brevity of posts. I am working on ideas for articles for the new year. 

If you have any suggestions for topics you'd like to read about, please drop me a line and let me know. I am always looking for new angles to cover.

I will share our Christmas news and how our season of goodies, candy, and abundance of food at this time of year worked out for us.

Sawyer is doing great! He's a tough little guy. 

I am sure Santa has taken notice :D

Merry Christmas to one and all!

New Book Deals with the Issue of Parenting a Child with Special Needs

I am thrilled to announce that author and super-blogger, Jolene Philo, will soon be a guest on my blog to discuss her newly released book, Different Dream Parenting. Jolene's first child was diagnosed with a life-threatening birth defect only a few hours after birth. He was immediately flown to the University of Nebraska in Omaha for surgery. In her book, she shares her story, as well as those of others who have faced the life-altering whirlwind that takes place in the lives of families who discover their child has a disease or disorder. 

About Different Dream Parenting

If you are the parent of a child with special needs, you are aware of the daily challenges. There are special tasks in caring for your child and other unexpected circumstances that can arise. It is a labor of love with life-long rewards: the smiles, the hugs, and the milestones your child reaches.

Whether you are a caregiving veteran or new to the experience, as I am, Jolene's new book has some welcomed help to offer.

What Issues Are Addressed?

Jolene takes us from diagnosis and coping to preserving the family.  She shares helpful tips for the stressed out parent as well as advice for keeping your other children from feeling neglected. Jolene also addresses the spiritual needs of parents and how to work well needed devotional time into a hectic routine.

I was delighted to find many helpful resources and links for parents of children with various needs. Jolene has done her research and she shares them in Different Dream Parenting so they are readily available. I particularly appreciated the tips for helping deal with stress, as we tend to neglect our own needs while caring for a special-needs child. 

Different Dream Parenting has become my go-to handbook for valuable information. 

How can you be prepared for stays at the hospital? How do you prepare your child for life-changing news? Who can you turn to for help in caring for your child? How do you keep your child occupied during a long hospital stay? Finally, is it possible to keep your spirit nourished when you are too tired to think? Jolene has provided wonderful daily devotionals to keep your spiritual engine running when you don't feel you have the strength to continue.

Jolene does a marvelous job covering topics I hadn't even thought about while I was going through the transition period when my son was first diagnosed with juvenile diabetes. I highly recommend this book to all parents and caregivers of children with special needs. It answers questions you haven't asked yet.

I hope you'll join us at the beginning of December when Jolene will be a guest on my blog to discuss her new book. We will also be giving away copies of Different Dream Parenting to randomly selected commenters. You can purchase a copy now at http://www.dhp.org/Products/UB913.aspx to take advantage of a 10% discount off the retail price. Then, join in the discussion when Jolene stops by for a visit in December, ask questions, or share your story and useful tips.

I know I can't wait to glean from her experience and knowledge on many topics. How about you?

Halloween Treats can be Tricky

*photo courtesy of masterworks.wordpress.com*

This was our first Halloween since "the diagnosis."

 All the chocolates, licorice, and teeth-pulling treats are  magnified during this time of year.

So how should we handle it?

I spoke with a young lady yesterday who has been diabetic since she was five-years old. She shared with me that when she was a kid, there was no trick-or-treating for her, and if she did, the candy had to be given sparingly. She took note that her friends didn't have to live like that - watching how much candy they ate and taking shots - so, why did she?

It must feel like some sort of punishment to a little kid, being left out of holiday festivities. Think of all the food-centered holidays: Thanksgiving, Christmas, Valentine's Day, Fourth-of-July, Labor Day, Easter, and the dentist dreaded Halloween.

It's definitely calorie-free to dress up in costumes, and certainly healthy to walk around the neighborhood on a brisk evening collecting goodies. It's the eating of the hard-earned treats that becomes, well, tricky.

*photo courtesy of myfrugaladventures.com*

I figure that everything in moderation is okay. Well, almost everything. Rather than going door to door this year and having to moderate all those unnecessary sweets, we took Sawyer to our local mall for trick-or-treat. They were sponsoring a two hour event for kids, which included a costume contest and trick-or-treating at the stores. This gave Sawyer the experience without the excess. Later that night, we had a candy hunt for him, sort of like an Easter egg hunt. He had lots of fun with that. We also let him dress up and go from door to door within our home, knocking at each one and saying "Trick or Treat?" as each character opened their door.We treated him with some goodies and he didn't pull any tricks.  I smiled when he squealed with delight and laughter as he said, "This is fun!" 

The candy is put out of reach and we allow him a piece or two with his meal or as a snack. The carbs are counted and he is given insulin for the treats. 

 We will make it through and recover in time for the one month Thanksgiving/Christmas gluttony that occurs each year. Yikes!

A little candy is okay. Moderation is key. This isn't a lifestyle that just diabetics should live by. 

After all, we all should moderate our intake of sweets. 

I'm sorry, Sawyer, but you just can't sit and eat that entire bag of candy in one or two sittings. Nobody should. So, I hope he learns that this isn't just a diabetic thing, but a healthy lifestyle thing for everyone. 

I wouldn't want him to feel left out.

His good attitude about all of this tells me he doesn't feel like he's missing out on a thing. 

First Road Trip Away From Sawyer

Photo courtesy of twogirlstakeonlove.net

We had to go where Sawyer wouldn't be able to accompany us; a college visit with our older daughter.

A tour on campus would be lengthy, detailed, and our total attention required.

Sawyer would have to stay home.

There was one little problem; Sawyer had never been under the care of anyone other than my husband or me.

We deal with the obstacle of not having support from family, friends, or neighbors. 

In short, we had our son in our later years, after parents and grandparents had passed on. My siblings and cousins, as well as my husband's, live out of the area. In addition, we live rurally. There are no close neighbors to call on for assistance. 

I won't lie and say it's an easy thing to raise a child with several special needs. It has been a challenge.

I honestly did not want to leave Sawyer and make the two hour trip away from home. In my mind, that was too far away from him if he needed me. 

Fortunately, Sawyer does have an older sister. She is 26 and doesn't live at home anymore, but in an absolute emergency, I will call on her. 

I had given her some diabetic education in treating hypoglycemia and checking Sawyer's blood glucose levels. She hadn't yet been taught how to calculate carb ratios, insulin dosages, and administration of insulin injections.

We had one thing going for us; Sawyer could administer his own shots.

I communicated with another mother of a diabetic, and she shared that she had her child's babysitter call her with the amount of carbs her child would be eating at a meal, along with his blood glucose number. She would calculate the insulin dosage so that the child care provider would know how much insulin to administer. In fact, her son knew how to give his own injections, so it was pretty much a no-fault system. 

This gave me some peace of mind on my first day away. 

I had Sawyer's snacks and meals prepared in advance. His sister then had only to call me with the blood glucose number and carbs so I could do the math and Sawyer could administer his shot. 

His sister is a smart cookie, so I showed her how to calculate the numbers in the event I couldn't be reached. She did call, however, to be certain of the dose. 

It's a delicate thing, dosing insulin. Just one unit can make a huge difference in blood sugar levels. One unit too much, and hypoglycemia may occur. One unit too little, and a child may become ill due to hyperglycemia.

*Photo courtesy of feastoffun.com*

The day came when we had to leave Sawyer. We would be gone the entire day and guess what?

It all worked out.

It's a hard thing to give up control and trust that your child will be in good hands. Add to that, a disability, and the nerves try to get the best of you.

Being a parent is a huge responsibility. So much so, I think there should be parenting classes before someone has children. 

Then parenting students would learn about the awesome responsibility that comes with raising a child. Unlike a puppy, you can't return it to the pound if you decide it's just not for you. 

Being a parent means you will no longer sleep soundly through the night. From diaper changes and midnight feedings to staying up past midnight wondering why your child hasn't come home yet. 

The investment is time and the return is love. 

There will be times when taking your child with you just isn't an option. It is at that time you will need to have someone in your corner you can trust. Preparation will alleviate some of the stress. If your child is old enough to participate in their care, allow them to do what they can. It will empower them and assure you.

*Photo courtesy of smcsundayschool.com*

We can't be with them all the time and the first trip away can be one of apprehension. It was for me. I dreaded it. Yet, it all worked out fine. 

It is important, though, to have someone you can call on in times of need. Have a trained family member, friend, or neighbor on deck. 

And take that first trip away with confidence.

Preparing for Back to School

The nights are getting cooler and the air is crisp. Merchants are displaying Halloween items; apples are bountiful at the fruit stand. Autumn is approaching. This season change reminds us back-to-school time is quickly approaching.

*twinpossible.com*

Going back-to-school is an exciting time: crisp new notebooks to fill, long pencils to wear down to tiny nubs, and sharp crayons with which to create the next great masterpiece. School supply lists coming home from students' teachers are growing longer these days with things like highlighters, dry erase markers, tissues, washable markers, folders, glue sticks, scissors, a back pack, and sometimes a lunch box. 

A trip to Wal-Mart and everything on the list is checked off.

The school has mailed the bus list and we make a note of our child's bus number. 

We have everything right?

There is a lot of preparation that goes into getting ready for school, for students and teachers alike.

As well as the traditional school supplies, a parent of a child with juvenile diabetes must ready the supplies their child will need away from home.

It's important to be prepared for any situation that may arise while the child is at school. 

While some parents may live in close proximity to their child's school, many do not. Some parents work out of town and could not attend to their child's needs quickly. At times when every minute counts, have the necessities on hand for your child. Supplies are generally locked in the nurse's office and she will soon become your greatest ally and advocate for your child. Keep in close contact with her and let her know what a great job she is doing.

I would also suggest the items be delivered directly to the school nurse, rather than sent in a back-pack. For a child to carry lancets and needles is an invitation for a problem. Especially with curious young children riding the school bus.

I've compiled a checklist of items that should be included in the child's kit.

- Glucose meter (Generally, the pediatric endocrinologist will provide an extra meter for the school at no charge)

-Test strips (enough to last at least a month, to save on frequent trips to the school and the risk of running out.)

-Insulin (If using a pen, they need to be replaced every 30 days. If possible, send enough for a couple of months. The nurse's office is usually equipped with a mini fridge for storage of medications.)

-Needles (if using a pen.) Syringes (if vials are used.)

-Lancets (A box should last quite a while.)

- Ketone testing strips

-Glucose Tablets (for low blood sugar episodes)

-A Glucagon pen (This is used for extreme episodes of hypoglycemia, which can result in unconsciousness or seizures.)

-Snacks (Especially important for gym days and active days outside on the playground. The nurse will keep your child's supply in her office cabinet with your child's name on each item.)

Good snacks include cheese sticks, yogurt, juice boxes, crackers, and granola bars. 

If possible, stock up on your child's supplies regularly, or as often as your insurance will allow, so you are able to send an ample supply to your child's school. This saves on extra trips later. Many pediatric endocrinologists understand the need for more supplies, and will prescribe a sufficient amount. I try to fill Sawyer's prescriptions every 30 days so I will not be shorted on our home supply.

Our school nurse keeps a log of Sawyer's blood sugar numbers and carb intake. She sends a copy home so I can keep track in our log book at home. This is helpful for when calling in numbers to the diabetic nurse at the endocrinologist's office. She also keeps track of his ketones when his numbers are high. If your nurse doesn't do this, perhaps she will if you ask. It's very important to keep track of the numbers for better blood sugar control; which prevents complications.

A little planning will make the back-to-school transition easier on you, your child, and your school nurse. 

Remember: it is important that your child feels secure and safe at school, as well as at home. Furthermore, it makes it easier on the school nurse if she has all your child's supplies at hand. Your child is probably not the only diabetic she attends to each day. 


If your child's treatment plan has changed over the summer, be sure to get a letter from your doctor to send to the school nurse. Our nurse cannot make any changes without a doctor's note. She cannot go based on what I tell her.

One last important thing to remember to send along with your child.

Lots of hugs.

*backseatmummy.com

They're doing a great job, and so are you. 

Confessions From an Imperfect Mom

(Photo courtesy of energydotsblog.com)

It had to happen eventually.

I messed up.

The doctor and nurses told me it wouldn't always be perfect.

And they were right.

This morning I was preparing Sawyer's breakfast. I went to write his carbs into the log book and there it was...a big blank space where I should have logged his lantus insulin from the previous evening.

Did his dad give him his medicine?

No, he was out at the time we usually administer his shot.

Did I give it to him?

I had no memory of it. 

I asked Sawyer if we had given him his lantus the night before. He thought about it a few seconds and said, "No."

How could I do that? 

I felt like a horrible mom.

 What it actually proved was that I am not perfect. No matter how hard I try to give Sawyer the best care, there are times I will mess up.

I asked myself how I could let this happen. 

Could it be because I have so many meds to administer in a day between Sawyer and me, that I just got confused? Overwhelmed?

Could it be the hectic schedule I've kept lately?

Maybe school work and end of the term stress?

Or maybe it's the lack of respite from caring for Sawyer and his needs. 

Ah, I have it. It's the vacation I haven't had in almost ten years. 

Whatever the cause, after speaking with Sawyer's pediatric nurse, she said "It just won't ever be perfect. It happens. He's fine. Don't beat yourself up over it." 

*Breathing a sigh of relief*

I see Sawyer as someone who needs me to be his superhero; perfect, flawless, and never let him down.

And yet, I did. 

By the way, Sawyer's numbers were fine. The nurse told me that because his blood sugar has been under control for some time now, it wouldn't have an impact on him. If it had been at the onset, then it would have been different. 

(Photo courtesy of anothercookieplease.com)

Try as we might, perfection isn't the definition of a mother.

Love is. 

And maybe exhaustion at times.