Monday, November 29, 2010

Gastric Pacemaker

TODAY HAS BEEN HUGE!!!!!!!!!!!!!!!!!!!!!  Our nurse from Nationwide Children's Hospital called today to check on Sammie's progress with the Domperidone. I explained that there are no changes, still extremely nauseous, with vomiting after most meals and dri - heaving for a majority of our day. The medication side affects are not pretty to say the least. The medication is being stopped and we are starting the process to get the GASTRIC PACEMAKER!!!!!! I don't know if I should laugh or cry, all I know is I don't think I have ever been so worried about my child.  This pacemaker is truly our last option.

Sunday, November 28, 2010

Sammie is blessed with an amazing siblings. Cassie is 18 and she helps me so much!!!
Diabetes and it's complication affect the whole family  Now that Sammie is unable to attend High school Cassie is always there for her. Cassie makes sure she is checking her blood sugar and helps her when she is sick to her stomach. Cassie makes it possible for me to go to work.
Cassie , I just want you to know that your dad , Sammie and I appreciate all you do. You are a great sister and daughter.

Thursday, November 25, 2010

Domperidone Update

Well, I wish I could report that the domperidone is working and that Sammie was able to enjoy Thanksgiving yummies. The medicine is not working yet, she started taking 1 pill 3 times a day for  1 week, then 2 pills 3 times a day .  It has been kinda a sad Thanksgiving, it is so hard to see her so hungry and not really be able to eat normally. She tried a small piece of ham and a cresent roll, and one chocolate chip cookie. She is finally asleep ( it is 12:41a.m.) , she spent hours dry heaving and crying. I am trying so hard to stay positive and be strong for Sammie. Black Friday shopping will cheer her up.

Tuesday, November 23, 2010

What am I thankful for today?


I am thankful for the discovery of insulin, without insulin my child would not be alive.

I am thankful for good insurance, we are able to afford the medical care and prescriptions we need.

I am thankful Sammie no longer endures multiple insulin injections daily and only needs an insulin pump site every 2 days.

I am thankful to live in a developed nation becuase medical care is so diffierent in other parts of the world.

I am so thankful for Big Randy, he is my shoulder to cry on, my best friend and a great dad to our children.

I am so thankful for the love and help from the Lord.



Wednesday, November 10, 2010

Back to Children's

  Well, we are back at Children's today. Sammie is having a  gastric emptying study.
She had to eat scrambled eggs sprinkled with a radioactive tracer. Then she gets x-rayed for 3 minutes, we wait for 2 hours then she gets x-rayed again for another 3 minutes. This should tell the doctors here how slowly her stomach emptys. This test was done at Cabell Huntington in October and  after 235 minutes her stomach was still not emptying. We are praying for an improvement today.
  She woke this morning with a blood sugar of 60, and was not allowed to eat or drink anything. We were able to get her glucose levels up by disconnecting her insulin pump for a while. She is feeling very sick to her stomack today and was only able to eat about half the eggs before her vomiting started.  Praying the test will be successful!!!! Now for some quality time with her, my better half and Little Randy.

Tuesday, November 9, 2010

6 things I want people to know about Diabetes!!!


I asked S if she wanted to weigh in on the six things she'd like people to know about diabetes.  Here's her list...

#6.  It sucks.
#5.  It sucks.
#4.  It sucks.
#3.  It sucks.
#2.  It sucks.
(excuse her langauge)

Ok.  We know how she feels!

As for ME....
Six Things, huh?  ONLY 6?  I have a feeling I could go on all day.  But I'll cut it down to the top 6....

The Top 6 Things I Want People to Know about Diabetes:

# 6. You can't just take a pill or change your diet and expect diabetes to go away.  It's not that easy.  But I wish it were...

#5.  There is NO CURE.  "S"  WILL NOT GROW OUT OF IT.  Insulin and pumps and CGM's are great - but they are not a cure.  They are advanced forms of life support.  

#4.  Diabetes is not controlled.  It is managed.  Some days better than others.  You can do everything right and things can still go horribly wrong.
( and they are going horribly wrong)

#3.  Diabetes never sleeps.  It never takes a vacation.  It never takes a day off.  Or an hour.  Or a minute.  And neither do we.  We fight this disease 24/7/365.   

#2.  Diabetes hurts.  It means blood.  Pricking  fingers 6-8 times a day.....around 3,650 times a year.  It means needles and shots and site changes... around 1,825 shots and 183 site changes a year.  It means arm draws and visits to the hospital.  It means more tears than you can count.

#1.  Diabetes can happen to you.  It happened to us on January 3 2005.  Our beautiful, healthy child.... who was 8 years old... was no longer so healthy.  Diabetes snuck in and decimated her immune system.  It left her so sick she could barely walk and sent us to the hospital .  

Diabetes isn't something that happens to other people.  To people with a family history.  To people who are overweight.  It can happen to you.  

Know the warning signs.  Know they can occur suddenly.

  • Extreme thirst
  • Frequent urination
  • Sudden vision changes
  • Sugar in urine
  • Fruity, sweet, or wine-like odor on breath
  • Increased appetite
  • Sudden weight loss
  • Drowsiness, lethargy
  • Heavy, labored breathing
  • Stupor, unconsciousness

This is the reason I work so hard.  This is the reason I blog, I advocate, I educate, I care. 
Help us find a cure!

Monday, November 8, 2010

All About 'S'

  Since part of my blog is about living and loving my child with Type 1 diabetes, I thought I would help everyone get to know her better.

Twister and She's the man

Tyler Perry and
Kellen Lutz

Amanda Bynes and
Dakota Fanning

Bookstores and
Hot Topic

 The Beach


Morganville Vampire Series

A little of everything

Spanish and

Chicago Bears ( Jay Cutler)
UK Basketball and
Kerri Walsh / Misty May Treanor

Grape Pop and Fruit Roll ups

I do not know, let me check my crystal ball   LOL


Sunday, November 7, 2010

World Diabetes Day

The number of diabetes supplies needed to manage Type 1 diabetes at times is staggering. Here is what our supply list looks like:
                                blood glucose meter,
                                test strips
                                alcohol pads,
                                glucose tablets,
                                glucagon emergency kit
                                insulin pump
                                infusion sets for pump
                                reservoirs for insulin pump
                                continuous glucose montior
My family is blessed with amazing insurance that covers most of S's medical needs. There are so many families with children suffering from this terrible illness without insurance, jobs and money to take care of their health needs. Please click the video below as many times as you can. each click raises money and with 100,000 clicks by November 14th ,  $75,000 will be raised to provide insulin for children in need. You can make a difference today by doing nothing more than pressing a button on your computer. What are you waiting for?

Do the BiG Blue Test, on World Diabetes Day

Friday, November 5, 2010

Nationwide Children's Hospital in Columbus

  Well, it was all I hoped for, the people in Columbus opened their arms and hearts and pulled me and Sammie inside a circle of support.. It felt so good to have people say " we know what you are going through, it is hard but we can help"  My fears and worries just evaporated. We now have a plan, Sammie is starting a clinical trial and going on a drug called domperidone. It is a medication that is not FDA approved for use in the US. but is used in other countries to treat stomach motility problems. It has some side affects but hopefully the good will out weigh the bad.   The doctor talked of feeding tubes and then of researching our insurance to see if it will cover the gastric pacemaker. It feels so good to have hope.