Saturday, June 12, 2010

Almost there!

I am almost there... to getting my pacemaker put into my stomach! I leave the 21st!!! Then on the 22nd I get the pacemaker put into me! And then I am magically going to keep food down! The doctors said that all the patients they have had that are like me have had great results! So when I hear that I wasn't scared about the surgery anymore! so that was a great releaf! But for now on the 16th I have my brothers wedding. But right now i am just counting down the days tell I leave to Columbus, Ohio! I will right soon!!!! Love Gentrie

Saturday, May 29, 2010

New Update

Gentire has BOTOX!!!!! Not my mom......but me! I have a certain muscle in my stomach that is over active and in a constant spasm so they went in yesterday and surgically placed some botox in that muscle to cause it to reset itself (hopefully) and allow my stomach to work better. We won't know if it helps for a week or two. If this does not work, they have recommended that I receive the GI Pacemaker. We will be working towards this in the mean time and be certain that we can move forward as soon as possible. The doctors were great, the hospital nice.....but not as nice as Primary Children's. It was so helpful to have a team of doctors that specialize in motility disorders. We still have much to understand and I still can't eat but hopefully I will be able to soon. I am a little disappointed that I didn't get the procedure this time, but I know that there is a process and that eventually I will get better. It is nice to spend time with my mom but we miss my dad. I am anxious to be home and have my friends and family around me. Thank you for your prayers and faith..........please keep praying! XOXOX

Wednesday, May 26, 2010

What is my test score?!!!

Test over.......lost my meal. It wasn't very good to begin with but awful and painful the second time. No score as of yet......another test tomorrow morning. They call it a stomach emptying active food......CANNOT be good!!!! After the morning test, my doctors will discuss the results, and come up with another diagnosis as well as a strategy for treatment. They are nice at Nationwide Hospital too but I miss my friends at Primary Children's Hospital.

It will be good when my "friends" are my favorite, regular, best, school friends and not people at a hospital. I am thankful for my good friends that keep in touch and visit or call me. I am lucky!!!

My mom is with me for this trip, we will be sleeping at the hospital tonight. I will let you know how the tests turn out tomorrow.

Good night!

Ohio not Hawaii!!!!!!!!!!!

Well.... Were here in Ohio and its way warm, but the down side is its not as cool as Hawaii but thats okay! I am way happy to be here! Today they are doing a nine hour test :( I started the test at 9:00 am their time and now its 2:00 their time and they are wanting me to eat a whole meal... Hahahahah funny! I will eat the meal to make the doctors happy but well see maybe it will stay down and I will be cured!!!!! I have been sitting in this weird room for a really long time now and I cant wait to get out of it!!!

Tuesday, May 25, 2010

Ohio Here I come!!!!!

SO.. Today is the day we have ALL been waiting for! I fly out this morning and then get into Ohio around six! And then in the morning they are putting me in the hospital and they will start teast at 7:00 in the MORNING...... this place is CRAZY well thats all for now

Sunday, May 23, 2010

Weekend Update!

Hey guys its Gentrie and I only have 2 days left until OHIO! Can you believe that? Well it has been quite a crazy week if you ask me. My fourth G-J tube became displaced and so once again, off to the hospital to have it removed and yet another tube put in it's place. Each time the doctors say that they have not ever seen anything like it.........lucky me! It is very painful and frustrating because each time that my tube does this, it takes a day or two for everyone to believe me that I am in severe pain and that quite possibly.......though I know it is tube has yet again failed.

I have been researching my health condition on the internet. The doctors here in Salt Lake do not understand very much about gastro paresis, they say it is very rare in kids and usually is quite short in duration. NOT mine.....I have been researching Dr. Carlo DiLorenzo in Ohio and he is world renowned for his work in this area. People travel from all over the world and yes, even from Draper, Utah to seek his expertise. He performs a procedure called a GI Pacemaker. It is apparently similar to the heart pacemaker but is placed on the side of my stomach. At Primary Children's Hospital, the doctors are unfamiliar with this procedure and it is still not FDA approved for use on children but we are hopeful to get a pacemaker anyway!

Two teenage girls have YouTube videos of their adventure with Gastro Paresis and their excitement of finally getting help with a GI Pacemaker. This gives me hope and makes me smile......which I don't do enough of lately. They have experiences that are like mine and so I have followed their stories and today, I contacted a girl named Megan by facebook.

She called my phone today and we had a great talk!!! I hope that I can help other people when I am better. Because we are both girls and teenagers, we were both often thought to possibly be anorexic or bulimic or just in need of attention.......NOT even close!!!!! I cry for food all of the time and when my friends and family are eating, I am always sad and VERY frustrated. It is so helpful to talk to someone who understands all of the pains and struggles that are associated with this little known condition. She also has had a great amount of pain in her stomach, which very few believe because they haven't experienced it and think that if your stomach doesn't work you shouldn't be feeling anything......not so!

My mom is going to talk with her mom today and see what they had to do to get the pacemaker. We will begin our journey to Ohio on Tuesday........just 2 days and we can get some of our questions answered!!!

I'll let you know how things are going........keep me in your prayers!!! XOXOX

Tuesday, May 18, 2010

All about me Gentrie Hansen

Hey this is Gentrie and I just wanted to tell a little about myself! Well I am 14 and during Christmas break I got diagonsed with Pedatric Gastroparesis. What that is, is really just a paralysed stomache. I haven't eaten since Christmas, and I am still not able to eat. But on May 25 me and my mom are off to Columbus, Ohio to go to the Nationwide Childrens Hospital. I have been in and out of Primary Childrens and finally all the doctors told me that they don't know how to help me so they told us to go to the doctor in Columbus! I will keep you posted on all that happens there and even here!