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.

Your Child Depends On You!!

Being a kid is tough enough without the complications of a chronic disease. The joy of a normal childhood is stolen from them...unless their parents take an active role in giving them the best care possible. 

I don't want to cast my son in the 'sick role' of society. My desire is for him to have as normal of a life as possible. This isn't always an easy task.

Shots, blood sugar checks 4-6 times a day, hypoglycemia, constant blood sugar monitoring during extraneous activities, keeping a daily log book of blood sugar levels, carbs and insulin dosages at every meal as well as quarterly endocrinologist visits are all a normal part of a diabetics life. These measures are small in comparison to the huge benefits received from following these steps - a long and healthy life.

Not doing these things for your child is equivalent to signing their death certificate. 

A bit blunt? Sure. But it's true.

I couldn't imagine any parent would neglect the duties associated with the care of their child with diabetes. It was incomprehensible to me...until the other day.

I had a conversation with a school health professional this week. We were discussing the advances in diabetic care with medical devices like the insulin pump and new research which could lead to a cure within five years time. She told me that in years past there may have been one child in the district with diabetes. Now, there are four alone in the one elementary school where she works. Diabetes is predicted to affect one in four people within the next 10 years. This is evidence of those statistics.

The next part of our conversation was disturbing to me as well as sad. She said the parents of the diabetics she is working with now are doing a great job with the children. But just a couple years ago, there was a young boy whose parents gave him no treatment at home. The only diabetic care he received was during his time at school. 

When he was in fourth grade, he passed away.

I was stunned. How could a parent neglect their child's diabetic care or any care for a chronic disease? This is blatant child abuse in my eyes. His death could have been avoided with monitoring and proper health care.

 From my experiences, I realize that insurance companies make it difficult for diabetics to afford their supplies. There is help possible through the American Diabetes Association and the Juvenile Diabetes Research Foundation. 

But flagrant neglect is unacceptable. 

If you or someone you know has a child with diabetes or the symptoms of diabetes, including but not limited to: 

Loosing weight without trying

Weakness and fatigue

Frequent trips to the bathroom

Unquenchable thirst

Tingling or numbness in your hands, legs or feet

Blurred vision

Dry, itchy skin

Frequent infections or cuts and bruises that take a long time to heal

Call your doctor. If you feel there is something wrong, advocate for your child. My doctor told me my son had a virus, but I knew it was more serious than that. Demand blood work be done. 

Also, monitor your child's blood glucose at every meal and before bedtime. Keep in contact with your doctor when sugar levels change, when they are ill or when they are vomiting. 

It's not difficult to do these small steps to give your child a great life.

Don't they deserve the chance at a normal life? 

Don't let them down. 

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 Day of School

photo courtesy of stjosephpost.com

The first day of school is an exciting time for children.  A new school year and a fresh start: new teacher, friends, a step up the grade ladder.
The first day can also bring with it anticipation, anxiety, and stress.
What awaits behind the closed door of the new classroom? What will the teacher be like: strict, like to play games, or will she/he give lots of homework?
Into the unknown they go. Although, not all things change.
Chances are, if they haven't moved to a different school district or advanced into the middle/high school, some of their friends will be in their new class, the principal will be the same as the year before, and the rules are the same.

The new school year brings with it adventures in learning and growth. Challenges await and students will be stretched beyond what they've done before.

As I sent Sawyer off on the bus, I wondered what new experiences awaited him this coming year. What subjects will excite him and which will he dread. Will he have a chance to express his creativity in art or music class, will he be the fastest runner or farthest jumper in gym class, or will he release his inner Shakespeare on stage or in writing?

Sawyer was definitely excited as he headed off to school this first day. He hadn't a care in the world, and I was glad of that.

I made a trip to the school nurse with Sawyer's supplies and snacks. We were prepared ahead of time, so there wasn't any anxiety, no last minute 'Oh No! I forgot to get that' moments. Our preparedness paid off.

And so begins another year. Where did summer go? Its visit was shorter than my in-laws.

Have a great year, Sawyer!

I know you'll be great!

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. 

Dining Out With a Diabetic

-photo courtesy achildgrows.com

It's about as glamorous as it sounds. 

Dining out was frustrating, to say the least. I thought we'd never do it again. 

To start off, I also have diabetes. The doctor has me on insulin, along with other medication. It was a hassle anytime I ate out at a restaurant and especially during lunch at college. I was too embarrassed to break out with my glucose meter and check my blood sugar at the table. I also didn't think the bathroom was a very sanitary place to check it. Therefore, I checked it while I was in the car prior to going in to the restaurant. At a restaurant, I would order my meal and when it arrived, make a trip to the restroom where I would give myself my insulin.  During lunch at school, I ate in my car; heat on in the winter so I wouldn't turn into a popsicle, and air conditioning when it was 80 degrees.

Sound fun? 


Double Trouble

After Sawyer was diagnosed, I was overwhelmed. How would this work? 

I am not embarrassed about checking his sugar and administering his insulin. What's really difficult is counting his carbohydrates. Some restaurants offer a nutrition list which makes it helpful in counting his carbs. This is important since Sawyer's dosage is dependent on what he eats. 

Carbs ratio + blood glucose = insulin units

So, you can see it's very important to know this information. The endocrinologist gave us a typed handout which covers some general foods, but not restaurants and other specialty foods. With two diabetics dining out, honestly, it's simply not fun. All I can do is make it as simple as possible by searching out and utilizing tools to ease the stress.

Sidebar Note

A carb is a carb. It does not matter the source of the carb.

That's not to say that different foods don't effect each person

differently, because they do. The way the nutritionist explained

it to me is, that whether it's a brownie or a slice of whole wheat      

bread, they are both carbs. They are processed by the body in the same way. It's important to note that diabetics

can eat what they want, in moderation, as long as it is counted

into their carb ratio. If you see a diabetic eating a cookie, 

brownie, or slice of cake, do not pass judgement. It might

be that they have allotted for that treat. Maybe they exercised an extra half hour so they could have dessert at dinner. So long as it isn't a consistent habit, it's fine.
Pasta, potatoes, and bread are on equal ground with treats.

This is what helped me.

First, I have a copy of The Calorie King in my son's kit. We take it with us everywhere we go. I have a spare copy in my car. 

Yet, not all restaurants are listed. For example, Friendly's is not in the book. When we dined there recently, I asked for a nutrition information sheet. What they provided only listed calories. That wasn't the information I needed to calculate Sawyer's dosage. 

I was able to access their Web site via my mobile phone, but that wasn't easily navigated. 

Then I found a wonderful and FREE app. for my iPhone called 'GoMeals'. This application allows you to keep track of your meals. It lists many supermarket foods as well as restaurants; including Friendly's. I was able to search the list and find the foods Sawyer was eating and count his carbs. I highly recommend this app for anyone who has access to an iPhone, iPod Touch, or iPad. I am unsure if this app is available for the Blackberry, but it would be well worth looking in to. 

Drawing

We have reached a milestone. Since starting

my blog in May, we have had 1,000 views. 

In celebration of this milestone,

I am having a drawing for one lucky commenter. 

For each person who leaves a comment, your name will

go into a drawing. Subscribe to my blog, and you will get 

a second entry.  Please leave your email in your comment

so I may contact you if  you are the lucky winner. 
Make sure to let me
know that you joined my blog. 

What is this fabulous prize you ask?

A copy of The Calorie King

 And, a cup of coffee on me at Starbucks.

Remember, leave your email in your comment and subscribe to my blog. It's easy and it's free. 

First Follow-Up

The First Follow-Up

What to expect at the first endocrinologist appointment after diagnosis

photo courtesy of wearechildrens.org

Leaving on Time

9:00 am on a Tuesday 

It seemed like we were cutting it a little close. We had about an hour and a half drive into the city to the children’s endocrinologist and my husband thought we had plenty of time to get there. I am the type of person who likes to leave early to allow for construction, traffic tie-ups, etc. Not my fly-by-the-seat-of-the-pants husband. The appointment was at 10:30 and we had never been to the doctor’s office before. If there was even one delay....but he was driving. So okay, I packed up what we needed for a short day trip and out the door we went.

10:30 am

So, we must have taken a wrong turn at Albuquerque. Looking at the Google maps, we should have gone east. How could I have known the map read backwards and we actually needed to turn west. This wasn't going well. I knew we should have left earlier. I made a call to the doctor's office and let them know we were a bit lost, but would be there as soon as possible. I hate being late. This wasn't a very good first impression.

Photo courtesy of cchealth.org

10:45 am

We arrived at the address on the cute little fridge magnet the doctor gave us while Sawyer was in the hospital. Standing outside the hospital entrance, Sawyer and I waited while his dad drove around looking for a parking space. Around and around the block he went, shrugging at us as he drove by. I decided we better get inside and dad could catch up with us later.

10:50 am

After going in the wrong entrance and having a security guard show us where we needed to go, (which was in an adjacent building) we arrived at the doctor's office. Out of breath and frazzled, I apologized profusely to the receptionist for being late. She handed me a clipboard with a stack of papers to fill out. I juggled the clipboard, my purse, and a tote with Sawyer's supplies, while trying to keep track of Sawyer. He also has ADHD/ODD. It wasn't easy and I'm sure I looked like a maniac to the others in the waiting room.

10:55 am 

Sawyer and I followed a nurse into a room where they checked his blood sugar and other vitals. My cell phone was ringing and dinging with text messages and calls from Sawyer's dad. I guess I couldn't balance the phone on top of everything else. I told the nurse I had to go find my husband since he didn't understand my directions from the text. She said Sawyer would be fine. She'd watch him. I left for 10 seconds, then went back when I saw Sawyer's dad found us. The nurse was gone. She left my ADHD son alone and he was also gone. GRR! I found him outside the door playing hide and seek from the nurse. 

photo courtesy of metroparent.com

This day was just not going well

11:05 am

The nurse connected Sawyer's glucose meter  to a computer and downloaded all of his numbers since his last visit. It's pretty amazing how far the technology has come for people with diabetes. The nurse was able to print a graph of Sawyer's numbers and track the trends - where were the numbers high, low, were they trending higher in the morning - things like that.

11:10 am

Be prepared with your child's glucose meter as well as his/her log book. Before we saw the doctor, we were given another clipboard with a stack of papers to fill out. Information such as blood glucose for the last week, insulin doses, and so much more was asked for. I'd advise anyone going to their endocrinologist appointment to bring the log book. I didn't know all of the numbers off the top of my head exactly, but I had a general idea. 

11:20 am

A representative from a research study spoke to us while we waited for the doctor. She wanted to know if we'd be interested in participating in a study about type-one diabetes. Researchers are close to a vaccine for juvenile diabetes, and data is being gathered to help with their research. She said we'd even get a $10 gift card for filling it out.

Wait a minute. I filled that long survey out and mailed it back. Where's my gift card?

Anyways, it was well worth the time if it will help researchers find a cure for this disease.

photo courtesy of lebonheur.org

11:25 am

By now, Sawyer was bouncing off the walls; literally. He was standing on the examining table, dancing on the white tissue paper and ripping it to shreds with his sneakers. He was pulling on the ear/nose/throat equipment, making a general racket, and I had a red forehead from rubbing my head non-stop. There was no reasoning with him. His father and I  tried to talk to the doctor over his noise and I was impressed with her calmness. She looked at Sawyer and then to my husband and I before saying, "I think you may want to see about getting him something for that."

 Indeed.

In Conclusion

Overall, the visit went well. Sawyer got a thumbs up from the doctor. She gave his parents props for a job well done, also. 

Phew. Through all the mayhem, we did something right.

photo courtesy of co.madison.tn.us

Tips

If you are going to an endocrinologist appointment, or any specialist for that matter, remember first and foremost to leave a little bit early. Allow time for wrong turns. It will save stress later; especially if your child has trouble sitting still in the examining room. Also, bring all the information you have - log books, journal entries, meal diaries, glucose meter, and something for a headache. 

It ain't pretty and it ain't perfect but we made it and so will you!!

photo courtesy of theexecutivebrand.com