Our sweetie pies

Our sweetie pies

Sunday, February 7, 2016

wearing red and heart failure

Here is my helper.  He blogs for me when I am busy. :)

February is the month to bring awareness to our heart health.

This is a perfect month for this as we are already buying chocolates and cards to express the love spilling over from our hearts.

Just like type 1 diabetes, I also knew nothing about cardiomyopathy.

my little guy is now 16 months old and the end of my pregnancy led to me learning all about heart failure:

When I showed my obgyn, my swelled ankles, he said that it was hot that day and typical in pregnancy.  I had never had swelling in pregnancy before, though.

When I said that I couldn't breathe or lie down after I had delivered my baby, the doctor thought that I was suffering from anxiety or needed more sleep.  They even ordered a walker for me to just get out of bed!

x-rays finally revealed fluid in my lungs.  pneumonia was diagnosed, yet that didn't feel right to me.

The doctor decided to order an echocardiogram, just in case.  heart trouble was unlikely and rare for someone like me.  I was only 41 and healthy.  no high blood pressure or health problems prior to this.

yet, my echocardiogram proved invaluable.  my heart was too large and leaking.  I always hear the narrative from The Grinch who Stole Christmas where it was a good thing that day that the Grinch's heart grew three times its size.  For the Grinch it was a good thing.

But in a hospital, in real life, this was very bad.

I was in heart failure.  diagnosed with cardiomyopathy.  then they sent me home a few days later, thinking I would be okay.  Because I was naturally thin, my extra 30 pounds of fluid looked normal to the doctor.

I replay that night at home, in my mind over and over.  I am so lucky I survived that night.  I  couldn't breathe or even sit comfortably let alone lie down.

I had my husband take me back to the hospital, the next day where from the emergency room, I was admitted to the cardiac floor.  A heart monitor was clipped on me and I was now an official heart patient.  Two weeks later, I went home after an angiogram, lots of medication and thirty pounds lighter.

I survived.  Just as my children with type 1 diabetes survive.  We are survivors.

Take a moment to educate others on what life really is for those of us living with diseases.

Be thankful for those that don't have to.

just be thankful.

and eat some chocolate.  

Friday, February 5, 2016

A natural article that was grossly misinformed about type 1 diabetes

There was an article recently written in regards to American Girl recently adding a type 1 diabetes kit to their store.  Many of us have daughters that have type 1 diabetes and have American Girl Dolls.  American Girl Dolls have been selling dolls for years that are made to be like your daughter.  The child gets to pick the hair color, the eye color, the skin color, glasses, and many other choices to reflect the child.  This has been a fun way for a girl to be able to celebrate herself rather than just with a Barbie doll that inaccurately represents what girls grow up to look like.  American Girl even sells dolls with history and educates girls on different time periods and cultures.  There are movies and books that tell these stories featuring the girls that are then sold as dolls.  

But what if your daughter breaks her leg? or gets braces?  Do they still feel as lovable as the girls in their class?  American girl has been selling little wheelchairs and crutches and  headgear for dolls to again validate what our daughters may be going through.  

But what if your child is suddenly diagnosed with a disease?  What if your world is turned upside down one day at a doctor's office when the doctor tells you that your child will be taken by ambulance to their nearest hospital because they may die if not treated?  This has happened twice to us.

Our daughter was diagnosed at 3 and then two years later, our son was diagnosed also at age 3.  No connection except for coincidence that they both happened to be age 3.  Our daughter had been a healthy girl that suddenly stopped  running.  She was too tired to finish riding her bike around the block.  She couldn't go to the bathroom enough.  four times an hour.  And yet she was still thirsty.  What had we done to cause this?  Nothing.  It is an autoimmune disease.  Her pancreas was dying.  Therefore her body couldn't produce insulin for her anymore and her body was beginning to shut down.  We didn't know anything about type 1 diabetes.  I thought it must be a bladder infection.  The doctor routinely did a urine test among other tests and that is what prompted an immediate call to the endocrinologist and an immediate trip to the hospital.  I will never ever forgot the picture in my mind of her sitting listlessly on the floor of the doctor's office, playing with a nurse while I tried in shock to reach my husband by phone.  

The picture on top shows the young girl that started a campaign with her mother to get American Girl also carry a diabetes kit like she wears so that her doll could also be like her.  Because any child like her or my daughter once diagnosed, is burdened with a lot of equipment to stay alive.  She no longer wanted a perfect doll that looked like her.  She wanted a doll that also still smiled while wearing a pump that gave her body insulin, a meter to constantly check her glucose levels throughout the day.  glucose tablets(smarties)  to prevent passing out from too low blood sugar levels and a few other items.

The next photo shows a woman's son and his devices that he wears to stay alive and thrive.  He is wearing an insulin giving device on his arm and his watch actually shows his glucose levels that is being transmitted by a different device.  

The third photo shows a new device that is being developed through research that is actually leading towards a cure for type 1 diabetes.  This involves introducing new cells into the body that the body won't reject since type 1 diabetes is an autoimmune disease.

The last photo is my son's continuous glucose meter that he wears and woke me up at 5 am this morning alerting me that his glucose levels were going too low.  Thank goodness for these devices and alarms that keep him safe and healthy, yet a tired mom I am.  

And this leads us to an article recently published by a natural health website.  The author decided to critique American Girl's decision to sell type 1 diabetes kits for dolls.  The author then decided to write as much uninformed propaganda that they could about parents of kids with type 1 diabetes, children with type 1 diabetes, and even that type 1 diabetes is already curable and caused by bad diets and bad parents and how could American Girl support such an atrocious thing??

Well...here's my rebuttal for anyone that takes garbage for fondue.  Talk to a parent of a child with type 1 diabetes.  Pay attention to the tears rolling down our faces as you ask us what type 1 diabetes really is and how it has affected our lives.   We might even tell you about some kids we know about that actually have passed away from not being diagnosed properly or going too low in the night before they could be treated or ending up in the hospital sick with too high glucose levels and kidneys shutting down.  Then we might tell you how amazing our child is.  And that they are our heroes.  They have taken hundreds of shots, site changes, blood work, lots of times  pulled aside at school or in the middle of a soccer game to be checked.  They survive and thrive.  And so do we.  

To: Natural News that thinks they know more than us; I hope you don't find yourself with a diagnosed child one day and have to join our club.  Your ignorance may cost them their lives.  The good news is that we would be there for you.  we are far more educated and we are more gracious too.  We would welcome you and support you as its not a fun club to have to join.  But in our club, we don't condemn, we share coffee and wipe each other's tears.   We keep each other going.  Because we know how serious this disease is and yet have to keep strong for our kids.  And this is why we love that American Girl has included a kit for our daughter's for their dolls.  It's just one small thing that a company can do to help our daughter's still smile in a tough world with an unfair diagnosis.  If you ever find yourself in this situation and across the table from us, drinking a coffee, we might even offer to  buy you a type 1 diabetes kit to go with your child's American girl doll.  

Because isn't that what it's all about?  Helping kids and families to grow and thrive?  

It easy to think that you have all of the answers until you are suddenly asked to live it.  

Sunday, January 31, 2016

a fun find from Bath and Body Works

There has been a new discovery in the diabetes community that has been spreading like wild fire.  Bath and Body Works stores have designed and are selling these new cases to hold their soap dispensers.  However, those of us that have children that carry CGM's (continuous glucose meters), have discovered that these fun new cases work for these too!

Prior to this discovery, the only choice was the plain business man black leather case that comes with them.  When I visited the store the other day, the only two choices that they happened to have were blue and glitter clear.  Perfect for us as I needed one for a boy and one for a girl!

The kids have been having fun carrying them around now!

Thank you Bath and Body Works!  (Even though, I don't think they know yet what we have all figured out)

Thursday, January 28, 2016

ice skating

and sometimes we just have fun!

homemade fudge fundraiser

our sweeties helped to make a sweet of homemade fudge to fundraise for their big sister that needs to pay to go to outdoor education in the Spring.  This is a required camping trip by the school that has the students go to cabins with their teachers and they learn all kinds of neat outdoor activities and education to bond as a group for several days, to get ready for middle school the next year.

Each family must pay for their child in addition to school tuition.

We made fudge and sold at a school fundraiser last weekend.  We still have more fudge!

It is delicious and we can ship!

We are selling each package for $3 each.

please help us send the sweeties big sister to outdoor ed!

please email me at jenes14@yahoo.com, if you can help us!

Thank you!

if you give a child with diabetes pancakes...

We started our morning with pancakes.  He started his day at 81 which is great.  However, going to school, I wasn't sure how much insulin to give him to go with the pancakes when he was already under 100.  I knew that I didn't give him enough insulin and planned to give him more at school to be safe.

Then I couldn't find my car keys.  I still can't find my car keys.  This delayed me.  My husband finally came back home and gave me his key for my car.  I packed up the baby and headed to my son's school to check him.  By now, the teacher was texting me that his cgm was alerting that his blood sugar levels were going up.  I figured.

When I arrived at school, His meter said he was 540!!

I quick gave him a lot of insulin.  I even rounded up a bit because he had started to eat a cracker before we knew he was that high.  But then he didn't want to eat and he was just thirsty.  Of course.

I went and got him a water bottle and let him drink that.  Then I waited and checked him in a bit and he was already down to 440.  I left and went to check on my daughter with diabetes and then came back to see how he was doing.  He was now down to 330 and still had a lot of insulin on board.

Now I was worried.  It was great he was coming down but he was coming down really fast and I couldn't leave him.  I quick took my baby to my mom, so he could play, and then I headed back to my son.  By the time I rechecked him, he was now 179.

He still didn't want to eat anything so now I was just worried he was going to go low at some point.

I hung out while he cycled through the centers in the classroom.  I learned about needs vs wants and some history lessons about how people used to get their food and water.

I had watched the clock move slowly while waiting and finally it was lunch time.

He was 97 heading out to lunch and I sat with him at the picnic table.  What I had been waiting for, finally happened.  He began to yawn as he took bites of his apple and then laid his head down on the picnic  table.  Another student came over and asked how he was doing.  When I checked him, he was 55.  and still going down.

I gave him a juice and meanwhile, he slumped down on the ground and laid his head on the bench.  I kept talking to him and got him to drink another juice.  He still acted low and ravenous.  I rechecked him and his meter said 79 yet he still acted low.  My mom had given me a jar of frosting, just in case.  He wanted some.  So I let him eat some and pretty soon he was just eating from the jar, unaware of anything going on around him.  He had frosting all over his chin and cheeks and shirt.  I checked him again and he was now 90.  I took the frosting and told him that he was okay now.  He ate a little of his lunch and then lunch was over.  It was time to line up.

He was now okay.

I was ready for a giant vanilla latte.

The book we read last night that inspired the pancakes, that lead to not enough insulin, that lead to too much insulin, that lead to a low low, that lead to lots of frosting and juice, that lead to an emotionally exhausted mama...can you guess?