Saturday, January 11, 2014

Back to square one :(

                                     Well, much has happened since my last post (sad face)
. This picture was taken just a few days after Christmas and it was the most wonderful Christmas ever!!! There were few presents under the tree but that didn't matter because for those few days Sammie ATE!!! Ham, mashed potatoes, biscuits, boneless wings with honey BBQ, buttered potatoes, pizza, spaghetti,  French toast with bacon and sausage, panko parm chicken crusted with rice. She was able to drink grape juice and kool-aid and water. It sounds silly but it was amazing. 
On December 30th, Sammie started vomiting again and complaining of a headache . She had been exposed to the stomach virus and type A flu so I cautiously watched her for 2 days. Sammie was admitted to Cabell Huntington Hospital on January 2nd with meningitis again. Have you ever had the wind knocked out of you? That is how I felt when I got the word "no more IVIG treatments" it was deemed too dangerous because of round 2 of meningitis. IVIG had given her the ability to eat again and without it she will be back at square one.
Our doctor in Louisville is sending Sammie to Jackson Mississippi. he is not giving up but he has tried everything. Her appt is February 7th. I will take us 12 hours to drive there from Ohio. I am not sure how I feel about this appt. I am concerned he cant help her with just one visit. The expense will be great and that is a huge worry. . The emotional toll this takes on Sammie is another huge concern.  I believe God has a plan and we will take it day by day, keeping her spirits up .

Saturday, January 4, 2014

Christmas is over and 2014 is here. We had such a blessed Christmas and spent so much quality time as a family. Randy took the whole week of Christmas off which he has not done since the kids were younger. It was wonderful!! A couple days after Christmas it was 45 degress so we took the kids on a drive to Carter Caves.

Randy and I tried to not to spend our time together worrying about Sammie's future. Christmas has been a sad time for me since the passing of my mother but this Christmas I felt peaceful and so very blessed.

Monday, December 23, 2013


When  a family has a member who is chronically ill it affects everyone. The siblings are often overlooked. I am so blessed to be the mom of these wonderful kids. This is Cassie. She graduated with a Bachelors Degree in Business Administration from Shawnee State University. I feel sometimes like she had to grow up quickly. She was only 12 years old when Sammie was diagnosed with Type 1 Diabetes. When Sammie was diagnosed with gastroparesis in 2010 Cassie was a high school senior. She has been such a big help. She watched Little Randy and truly mothered him when I had to be in the hospital with Sammie. I am so very proud of her and love her more than she will ever know.
This handsome young man is Randy. Poor guy he was 4 when Sammie was diagnosed with T!D and a 4th grader when Sammie was diagnosed with Gastroparesis. I have missed spelling bees and  band performances. It seems like I have blinked and he has turned into this special, sweet and kind hearted young man. I love how he makes me laugh and love how he lays his head in my lap for me to scratch his head and back. He is and will always be my baby.

Monday, December 9, 2013

Every picture

 Because every picture
has a story to tell.

A parent is supposed to teach their children, not the other way around. 
Sammie teaches me every day about faith, bravery, and hope.
I sit and try to read or work on my computer but I can only pray. I pray that this will be the round to give her some type of relief. I pray that this round does not cause Meningitis again.
When her team of doctors come in she is all smiles; talking about her dreams of college and what NFL teams play this Sunday. I am in awe of this precious child.
Every picture does have a story to tell.


Thursday, December 5, 2013

    Sammie had her first gastric pacemakerr placed February 2, 2011. It worked well at first and then just stopped working. Our doctors tried adjusting the pacer setting but nothing seemed to work. April 2012 we were sent to Vanderbilt Medical Center in Nashville Tennessee. We stayed with the doctor at VMC until November 2012, when he was not able to help Sammie he sent us to Jewish Hospital in Louisville Ky. A new pacer was implanted on January 22, 2013. This new pacer only relieved symptoms for 2 short months.
Today I thought I would share medications we have tried
Zofran - did not help
Phenergan -  helps quite a bit but can't function during the day because of the sleepiness side effect takes every night
Reglan - worked a bit but caused lactation
Erythromycin - did not help
Imipramine - did not help
Domperidone did not help and caused lactation. This medication is not FDA approved. We received this medication through a clinical trial through NCH
Emend- did not help
Kytril through IV- helped a bit
Sancuso - is patch form of Kytril and did not help
Compazine - worked but caused excessive urination
Meclizine - did not work
Scopolamine - worked great but caused temporary blindness
Marinol - did not help vomiting or nausea but increased appetite
Diclegis -helped nausea but not vomiting, side effect was VERY sleepy. Can not take and function during day
Zuplenz - worked great at first but lost it's effect the longer she was on it. It is a form of Zofran. It is a film that dissolves on tongue.

Remember I am not a doctor simply just a mom. Consult with your doctor.
I hope this medicine list helps :)
Love and Prayers

Tuesday, December 3, 2013

. I can't believe we have been on this gastro journey for over 3 years now. In January Sammie will have Type 1 Diabetes for 9 years. IF you new to the "King Family Blog" here is Sammie's Story

Sammie's Story.

 She was a 3rd grader on 1/2/2005 when diagnosed with Type 1 Diabetes. I tried to give Sammie a normal life. She handled it much better than I did. I was so afraid to sleep. What if I made a mistake dosing insulin?? Her blood sugar numbers were crazy. December 2008 Sammie was not letting diabetes slow her down. She was now a 7th grader and loved playing basketball and volleyball. After playing in a basketball game Sammie said words that I will never forget, “Mom, I can’t feel my feet”. Several weeks later she was diagnosed with Peripheral Neuropathy. The diagnosis of neuropathy typically doesn’t happen until after years with diabetes. Sammie has never had an A1C above 9 except for initial diagnosis. Doctors told us that if would continue to maintain tight control that complications would not continue. The next 2 years Sammie had A1C’s in the high 6’s and low 7’s. June 2010 Sammie was diagnosed with Hashimoto’s Thyroid and Autonomic Neuropathy. Sammie was still playing basketball and volleyball. She was dreaming of playing volleyball in college. August 2010, while on vacation in Myrtle Beach South Carolina Sammie started vomiting. October 2010 we received a devastating diagnosis. Gastroparesis which means paralyzed stomach. Sammie’s stomach does not empty normally. She has constant and severe nausea and vomiting. She has to rely on a feeding tube to get life sustaining nutrition. . 8 years after diagnosis Sammie has lost all sensation in her limbs. She no longer is able to play the sports she loves and has not been able to attend high school since her freshman year. (She is a senior now) She has had 2 gastric pacemakers and both have not given much relief. She no longer has vein access in her arms due to 3 years of battling dehydration so she has a permanent mediport.  We have spent hundreds of miles trying to find medical help, from Columbus Ohio, next Nashville Tn. and now Louisville Ky. Our doctors in Louisville believe her immune system is on over drive and is attacking her body. So now she spends Fridays in the hospital for 6 hours getting IVIG treatments hoping that it will help combat symptoms and slow down her auto immune system.  IVIG caused meningitis which was pretty scary. It has not helped our nausea and vomiting but has helped the pain of peripheral neuropathy. I will be posting soon about two new medications that Sammie will be trying to help her gastroparesis.
Love and Prayers,
Mom 2 a T1D Puke Princess

Sunday, July 24, 2011