Sunday, July 24, 2011

Thursday, July 21, 2011

So Very Proud

    My family has been through so much the past year, sometimes it is hard not to wonder what God's plan is for us. Today I saw God's plan in action. Sammie spoke to a group of corporate JDRF sponsers. She told them her diabetes, gastroparesis story and I do not think there was a dry eye in the room. Her strength amazes me. She did a wonderful job and Randy and I are so very proud. I know my mom would have been so proud of her today.

Wednesday, March 9, 2011

DAY OF HOPE



Hope is faith holding out its hand in the dark. ”
~George Iles

Today is "A Day of Hope".  People all over the world are writing this one word on their hands.  In honor of someone special.

It's one word.  One small, four letter word.

But it's BIG in meaning and purpose.

Hope is everything.

You might wonder.... WHY would I want to write this word on my hand?  What good is that going to do?

Maybe someone sees it and it brightens their day.

Maybe someone asks you about it and you can talk about life with Type 1.

Maybe it encourages someone to ACT.

Maybe it helps someone to keep holding on... to keep swimming... to never give up.

Maybe it helps YOU smile when you see it.

Maybe it reminds YOU to keep swimming.

Maybe it makes you feel proud and determined...

There is power in this word.

There is power in people all over the world BELIEVING in HOPE.

“Hope is not a dream but a way of making dreams become reality.”
~Unknown

Of course, it's not too late!  Go ahead and write it on your hand tomorrow.  You can have HOPE any day.  You SHOULD have HOPE every day!

Sunday, February 6, 2011

Final Post

   I have learned so much during this gastro journey. I know things like, even though Sammie's  A1C has
been 7.1 - 7.4 for almost 4 years terrible complications can still happen. I know things like , when your stomach does not empty properly your intestines do not empty properly. I know what a motility catheter is and what it does. I have also learned that the line between overwhelming sadness and overwhelming happiness is an invisible line. 
   As Randy, Sammie and I will leave Nationwide Children's Hospital, I  have overwhelming happiness because Sammie will be coming home with a permanent gastric pacemaker. Coming home also brings me overwhelming sadness because I will be saying good -bye to my beloved mother.
  I have so many people to thank whom without there love and support this gastro journey would have been nearly impossible. First, I want to thank my mother, she is the one who taught me to always, no matter what be your child's advocate.  I want to thank my brothers and sisters who filled in for me so I would leave our precious mother.  I want to thank my United Baptist Church family, your support has meant everything to me. My mother's family in Wisconsin (Anna and Sarah and Linda) always kept my family in their prayers, .I want to thank my Aunt Phyllis and Uncle Frank, and my Salyers cousins who always had us in their thoughts and prayers. I really could not have made it through this journey without my daughter Cassie, she had to be Little Randy's mommy while I was away. Big Randy for loving me and listening to me. I want to thank Sammie, your life has not been smooth sailing. The waves have been rough, but God has always held on to our ship. I will continue to be your advocate, I will continue to fight for awareness and I will always fight for a CURE.  Please never forget your grandmother loved you and was very proud of you.

Sunday, January 30, 2011

Columbus Round One

Sammie and Dad in shuttle on way to hospital

Sammie having some fun.

Sammie being silly , with her bubble gum mask.

Sammie with her pre - surgery nurses.

Sammie and dad acting silly.

Sammie and mom.

Sammie with her surgery nurses

Sammie's room.

Sammie and Aunt Helana

Sammie and Glenna

Sammie and Little Randy

The blue wire is the pacemaker lead. It is attached to her tummy through her nose.

This is the actual pacemaker. 

This is the doctor who did the temporary surgery and will do the permament surgery. his name is Doctor Steven Teich and he is the worlds best surgeon for gastric pacemakers.
       



 Finally, I have a few free minutes to post Sammie's progress and some pictures.  Sammie had a temporary pacemaker put in on Friday. When she was being wheeled on the hallway toward her room , where I was waiting.She was awake and alert, and the miserable sick look was gone from her pretty face. Her first words were " Mom, I feel better. I think it is working".  She did really well all of Friday and the morning on Saturday, since then not doing so well.  Hopefully permament pacemaker will be placed Monday or Tuesday.

Wednesday, January 26, 2011

First day in Columbus



Wow , what a 1st day. Sammie was so amazing during the motlity study. I do not think I could have handled what she went through. I am very proud of her. The study concluded that when Sammie's stomach is empty  it works almost normal. When food is introduced, her stomach freezes.  So our gastro journey continues!!!
video

Saturday, January 22, 2011

My Mom

     I have the most amazing mother . She left her family in Wisconsin when she married my father, they moved to Franklin Furnace. She raised 6 children with virtually no help, she could not call her mother daily, she could not jump in her car and go see her when she needed something. She is my role model of what a great mom should be.
     My mom quit her job to stay home and help take care of Sammie , so I could work.
( Sammie was only 2)  My mom has been by my side for every milestone. My mom and I  had a party when Sammie finally weighed over 20 lbs.. She has been by my side for every hospital stay, when she was diagnosed with diabetes my mom helped us all through those first days.
    This hospital stay ( and the few before this one) are different. My mom is no longer able to be my side. She is fighting her own battle. It breaks my heart to say she is losing her battle. On Monday I must leave my precious momma to get help for Sammie. I will be losing time with her, time I can never have back.  I have been working for weeks to find Sammie help for gastroparesis, and I am soo excited for the pacer, it will change her life.  But my heart is breaking to leave my mother behind. I know now is the time to be strong. I love my husband and children but I really just want to be my mommies little girl again. I love you momma!!!

Tuesday, January 18, 2011

Sammie Update

      Sammie has really been struggling. She has recovered from appendix surgery but her gastroparesis and neuropathy seem so much worse. Our blood sugars have been great. Tomorrow , we meet our endocrinologist. Her name is Dr. Kamboj., she will be taking care of Sammie's diabetic needs while in Columbus.
      I plan on blogging ( hopefully video blogging) every step of the way. 

     I hope and pray no other family has to go through the issues surrounding my sweet little family.

Wednesday, January 12, 2011

New Surgery Date

        Ok, I am going to try and not get my hopes up, but our new suregery date is JANUARY 28TH. I told Sammie our new surgery date, she said " Mom whisper, I don't want my body to know. I am afraid my gall bladder might decide to go next." She is soooo silly, I'm glad she has a sense of humor today :)

Looking For A Silver Lining

     I have always known that my Salyers / King / Cunningham families were amazing , special people.  I never imagined the strength these wonderful people would give me. I reconnected with an amazing cousin, who totally understands the kinda child Sammie is, although she is miles away in Texas our bond is strong!!
     I have amazing cousins in Wisconsin, that send love and prayers often. I have wonderful Aunts and Uncles that I know if would call if I needed anything at all.
     This morning as the sun is rising and Little Sammie is asleep right beside I feel so blessed and loved. Praying today is the day we have a new surgery date.

Tuesday, January 11, 2011

IT'S OFFICIAL !!!

      

Definition of NAUSEA

1
: a stomach distress with distaste for food and an urge to vomit
2
: extreme disgust
 
On a scale of 1 -10 , Sammie  is nauseous at a level 10, every minute.
She still gets so hungry and wants to eat but with eating comes dry heaving.

Definition of DRY HEAVES

: repeated involuntary retching unaccompanied by vomit

DRY HEAVING=VOMITING

She wants me to sit with her , she does not want to be away from me. She is exhausted.
Today I had to tell my sweet little Sammie THAT SURGERY IS OFFICIALLY ON HOLD.
I feel helpless, I wish I could wave a magic wand and help her. ( Not only her)
I quietly comforted her tears , telling her " God has a plan"
Sooooooo Sad

Monday, January 10, 2011

ROLLER COASTER

       I once again find my self shocked. I just really want to cry. One of the world's leading experts ( Dr. Hayat Moussa) on Gastroparesis called my home this evening. Dr. Moussa wants Sammie to heal a little bit longer before getting the pacer. I pleaded our case and she will speak with surgeron tomorrow for a final decision. I have fought so hard to find help for Sammie, I would never put her a risk. If Dr. Moussa thinks it will be best to wait , then wait we will. It is going to be a sleepness night in the King household.

EXCITING NEWS

       SURGERY IS ON SCHEDULE!!!!!!
   Sammie will recieve a temporary gastric pacemaker on Friday and hopefully if it helps , she will get the permanent pacemaker on Monday. I am feeling very nervous about the difficult days ahead, I know what Sammie is facing and it is scary.


 Our doctors at Cabell Huntington Hospital are really amazing . Dr. Susan Flesher has been with Sammie since the beginning of this journey and without her we would not going to Columbus this week. Dr. Dustin Robinson did such a great job removing Sammie's appedix.The pediatric resident Doctor Ramsey called our doctors in Columbus daily to give them updates I just thought it was important to thank them all. I think sometimes local doctors and local hospitals get a bad wrap, in our case everyone at Cabell  Huntington Hospital did an amazing job.
     

Saturday, January 8, 2011

A bump in the road

  Well, it is Saturday at 5:30 p.m. and Randy, Sammie and I just got home from Cabell Huntington Hospital. Sammie had to have her appendix removed yesterday. I think I am still in shock. My poor sweet baby, she just can't catch a break.

Sammie to Mom  " Mom, my body hates me."

How does a mommy respond to that??
I went to hospital chapel , praying that maybe just maybe her appendix has caused all of
 problems and maybe it is not Gastroparesis. I know God has a plan.

  Now, we wait on a call from Columbus ( Monday ) . I am praying the doctors tell me surgery can proceed but I am preparing Sammie for the fact that surgery maybe postponed. It has taken some much to prepare for this surgery and 10 day stay in Columbus. "Boy, what a pity party I am having"
I am a happy optimistic person, this is not like me. I will just pray and remember, God has a plan.

Thursday, January 6, 2011

This is not good!!!

   Just when I thought everything was going smoothly, we have hit a bump! Sammie has been feeling so bad, barely eating or drinking. ( a bite or 2 ). She seems more exhausted than ever. Sammie takes her synthroid    every morning at 5 am and this morning at 5 she was already awake and moaning. She was hurting!! Gastroparesis does cause some stomach discomfort but not this much pain. I thought maybe she was constipated, so we waited to see if bowels would move. If only you knew Sammie she is pretty cool. She has an abnormally high pain tolerance. ( like scary ) She was doubling over in pain and vomiting so hard.
  Thankfully her blood sugars have been right on target. I guess we will see tomorrow what our doctors think, I am really not wanting to transfer to Columbus. Cassie turns 19 on Saturday and I want to spend more time with my mother before we go to Columbus for the "real good stuff" I will do what is best for Sammie :)

Monday, January 3, 2011

D -Day

  January 3rd is a difficult day!!!!!!!!!!!!  Sammie's D Day. 6 years ago today, Randy and Sammie and I heard the words that haunt me at night. Your daughter is INSULIN DEPENDENT!!!!!!!! ( Type 1 diabetic)  Sammie would only live a few short days without insulin, that is our reality everyday. A little purple insulin pump keeps my daughter alive.
  Sammie isn't alone, there are other kids struggling. I just want all families of kids with diabetes to know, I not only fight for my daughter but for your child also.

Saturday, January 1, 2011

A Letter To Type 1 Diabetes From A Mom

Dear Type 1 Diabetes,

At this time six years ago you entered our lives. I did not know you and really I had not heard too much about you. You snuck into our lives without notice and lied hiding in wait. Slowly but surely you began to rear your ugly head. You took an eight  year old, active, fun loving, little girl and you made her tired, sluggish and sick. You did not give yourself away too fast, you camouflage yourself so well. You were undetectable to an untrained eye, as you planed the first of what I'm sure were many attacks. Only seeming like a flu that would go away and come back in a few weeks. What I did not know was that this sweet, little girl had an amazing and strong body fighting you every step of the way. You would attack then she would counter, you would attack again and she would match your every step. I really do not know how long this battle went on, but that poor little 8 year old's body just could not keep up with you and on Jan. 3rd 2005 her pancreas was unable to continue this fight. That is when Type 1 diabetes became our new "normal". There was nothing that she could have done, you had consumed her pancreas. You dug your nasty little claws into her and you were not leaving. We do not know where you came from or why you are here but let me tell you something, I will not rest until we find a way to DESTROY you. We will find a cure, but until then you will be fighting me every morning, noon and night. I am the mother of that sweet, amazing, wonderful, brave,tough girl and you have met your match. I can and I will give Sammie everything that she needs to defeat you. You may knock us down but we WILL get right back up and fight you even harder. I will do everything in my power to ensure that you do not take my babies eyes, you will not destroy my  girl's heart,and kidneys, You have taken enough. I see you now, I know you now and everyday that passes I learn more and more about you. I am watching and I will always be watching and I will be patient and I will wait and I will not give up until we find a cure, we will crush you!!

In extreme hatred
Caroline , or better known to you, as Sammie's mom