Tuesday, May 24, 2016

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. 


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. 

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.

Thursday, June 20, 2013

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. 

Thursday, July 5, 2012

Apple Leads the Way in Glucose Monitoring Systems

A New Innovation 
from IBG Star and Apple

As the mother of a little boy with diabetes, as well as being Type-1 myself, I am always excited when new innovations come along that make living with diabetes simpler.

Just out last month, IBG Star has partnered with Apple in developing a new metering system. The glucose meter connects directly to the Apple iPhone or iPod. It syncs with an app that is downloaded to your device. The app tracks blood sugar trends when you input data into your device. Blood sugar numbers are logged as well as other information to help your doctor evaluate your progress.

The data can be emailed directly to your doctor. It can also be  printed to take to your doctor on your next visit.

The blood glucose meter can be used alone or with the iPhone / iPod. It's smaller than most meters. This is a plus when having to check blood glucose in a public setting. Rather than pulling out an obtrusive device and drawing attention to an already uncomfortable situation, a child may appear to be just checking their text messages or playing a game on their device. 

Currently, most insurances don't cover the device. It is only available at Walgreens (for about $75 with a prescription from a doctor) and at the Apple Store ($99.95). 
The IBG Star Web site also has offered assistance with test strips. By registering for the Star Savings Co-Pay Program, a patient will never pay more than a $20 co-pay for their test strips. (Restrictions apply - including to those already on Medicaid, Medicare, or other state funded programs. Not valid in Massachusetts.) 

For more information on the IBG Star blood glucose monitoring system, click on the link below:

In a mobile society, it it isn't always practical carrying all the supplies needed for a day or weekend trip as well as the many diabetes supplies. For me, it's multiplied by two. 

One less cumbersome device to tote around makes this mom happy indeed. 

Sunday, December 11, 2011

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. 
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!

Wednesday, November 30, 2011

A Different Dream For Your Child

I am honored to have as my guest today, Author Jolene Philo. Jolene is not only an author and mega-blogger, but also a mom with more than twenty-five years of experience raising a special needs child. She understands the confusion and feelings of loneliness at the time of diagnosis - and beyond.

With the release of her new book, Different Dream Parenting, many parents will now have a resource to turn to when questions arise concerning many things: hospital stays, dealing with schools, and how to involve siblings so they won't feel left out. 

She also adds the necessary inspirational element that stressed out parents need. She provides devotionals with  scripture to give parents the strength to lift their heads above the rising tide waters.

Jolene, I'm glad you stopped by today. Tell us about yourself and your journey of hope.

When our beautiful newborn boy was transferred to a regional hospital, my husband and I felt lost at sea. A few hours later, we learned that our baby required immediate surgery at a university hospital 750 miles away. Without it, he would die. That news threw us overboard. We longed for someone who could come alongside and pull us out of the water. A book to chart a map through unfamiliar waters and assure us of God’s presence.

But our son was born in 1982 when pediatric medicine was a relatively new field. Families like ours were hard to find. Parenting books hadn’t been written. The internet didn’t exist. Over the next twenty years, even after the surgeries and medical procedures that corrected our son’s condition were over, my search for parenting resources yielded scant results. Eventually, I sensed God nudging me to come alongside young parents lost at sea like we had been, to create a map they could follow.
Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs is that map. It’s a map for parents of kids living with medical special needs as well as conditions like Down Syndrome, juvenile diabetes, developmental delays, and autism, and those facing a terminal diagnosis. It guides parents by providing tools and resources they need to become effective advocates for their kids.
The book features interviews, advice, and resources from more than fifty families and two dozen professionals. With their help, the book addresses the situations parents face every day. Things I wish someone had told me, like:
  • Asking questions after diagnosis.
  • Dealing with insurance companies.
  • Preparing a child for a hospital stay.
  • Accessing financial resources and government monies.
  • Accessing special education services.
  • Determining optimum level of care.
  • Mobilizing volunteers at home.
  • Supporting the sibs.
  • Preparing a child for death.
  • Planning a funeral.
  • Participating in community and church events.
  • Creating a special needs trust for adult children with special needs.
In addition to practical advice, Different Dream Parenting tackles spiritual questions families are often afraid to ask. Questions about:
  • God’s sovereignty
  • Parental guilt
  • Setting and maintaining spiritual priorities
  • Grieving for children living with special needs
  • Grieving the death of a child
  • Passing faith on to children with special needs
Thirty day prayer guides in the appendices are for parents too exhausted to form their own prayers.
I remember what it’s like to be lost at sea, thrown overboard by an unexpected diagnosis, and drowning under a flood of caregiving demands. My goal is to put Different Dream Parenting into the hands of floundering parents so they have a map and know they’re not alone. To order the book, visit www.DifferentDream.com and click on the “buy the book” tab. 
Thanks, Leann, for this opportunity to guest blog at Journey of Hope and tell people about Different Dream Parenting

Thank you, Jolene, for stopping by. I think your book is a must-have field guide for the unchartered waters of parenting a special needs child. I wish I'd had it in April when my seven-year-old son was diagnosed with juvenile diabetes. So many time saving tips and helpful resources are now available at my fingertips.

Jolene is giving away a copy of her book today. All you have to do to be entered is leave a comment and include your email address. 

Thursday, November 10, 2011

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?

Wednesday, November 2, 2011

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. 

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