Hey!!!

Hello everyone! Its Gentrie! So I know I haven't written in a very long time so let me catch you up!!! I now have have my pacemaker and it is doing amazing!!! I am able to eat small amounts often and only throw up about once or twice a week! I had a GJ tube but it wasn't working out for me so in September I got it taken out and a J tube put in! This surgery took place at Primary Children's in Salt Lake City, Utah! During this surgery the doctor cut the wires of my pacer so you know what that means... off to Ohio I went to get my SECOND pacemaker put in! I was out in Ohio for the rest of September and tell the end of October. Then November came along and thats when my newest struggle started. The morning of November 2nd was just like every other day, my mother left to work, I was of coarse on my feeds and sleeping and my sister left to school. When I woke up I made my usual breakfast 1 egg white and 1 piece of ham! hahah (never gets old) And I guess my mom had tried to get a hold of me through out the early morning, and she had this feeling that she or my dad should go home and check on me... Around I think noon or so my dad came home and found me on our kitchen floor not breathing and also without a heart beat. He call 9-1-1 and started to do CPR until the ambulance got to my house. They were able to save me and get me to the hospital. That night I stayed just to make sure I was okay and then the next morning I was discharged from Primary Children's and then I went home. I had a full 24 hours of clearness and then thats when things got bad. The night I was released my parents found me in a ball crying saying "their coming for me, and they are going to hurt me." and of coarse I was talking about the Paramedics. That night I had several flash backs and I also forgot everything... I didn't know my name, who my parents were, or anything. And it just got worse. Over the next three days we went back and forth to the emergency because it just got worse. I had complained of some spots around my head that hurt very badly... and when they did cat scans and everything it did show some bruising and stuff but what they thought I had was what they called Oxygen Deprivation. Which means while I was out my brain went so long without oxygen. And they said the damage would be permanent. But it just got worse. When Sunday came along I had lost the use of my arms and legs and could no longer speak. That night I was taken to the hospital and I was emitted to the Nero Brain Trauma Unit on the second floor of Primary's. That next week they did several tests and all they could see was the bruising of my head. The things that changed so much for me was not only my loss of use for my legs, arms, speech, memory but also I was finally hungary all the time, and my body felt like it was on fire... Like when you touched my skin it was burning and I was always bright red. They would take my temp and it would be perfectly normal but it didn't feel normal. I also developed sensitivity to my skin... Like if someone or something touched me I would cry because it hurt so bad. After the first week of testing they figured I injured the inside of my brain. They wanted to add me to their rehab team so I could get my speech, and movement back in my legs and arms. Finally two weeks pass by and I haven't gotten worse but I hadn't gotten better. They were going to send me home but my parents didn't like that idea. So they kept me and added me to their rehab team! I started in a full wheel chair... I just started with trying to lift my head or squeeze my hands. And every day I would have about two hours worth of physical, occupational, and speech therapy. I started with doing 15 minute sessions and by the time I left I had worked up to doing 30 minute sessions of therapy! I improved quickly and did really GREAT! I re learned EVERYTHING. no joke! I had some really different experiences and also challenges. But like all of my other experiences I have turned it into something that I have learned from! Now I am doing great! My memory is still bad but I hope it will get better! But I forgot to say why I had collapsed on November 2nd... Little to our knowledge I have a heart disease. I forgot what it is called but what happens is my heart will start racing at 200 to 300 beats per minute and it wont stop for a few hours. It will start anytime. We were lucky one of these weird things started in the hospital while I was sitting reading with my mom. And it went for 6 hours and finally the cardiac doctors decided to put this medicine in to my vein that stopped and re started my heart. It made it go back into a regular heart beat speed! It will happen every now and again and in two weeks I go in for surgery to get it fixed! I am now back to do half days of school and also getting back into sharing my miracle story to the whole world! In January I was able to go on my Make-A-Wish trip! I wished to go on the Allure cruise ship and also meet Taylor Swift because it just so happened she was going to start her world tour on that ship that week! So Make-A-Wish made my dream come true! It was more then anything I could have ever wished for!!! It was amazing and words just can't describe it!!! My life is going pretty good right now!!! Loving life and loving being a little more healthy!!! This is just a short update and I will give a better one tomorrow, but I have to go to bed! so XOXO to everyone out there!!! Gentrie

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
xoxoxooxoxoxoxoxoxoxoxoxooxoxoxoxoxoxoxox

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

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 test.......radio 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!!!
XOXOXOXOXOXOXOXOXOXO

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

XOXOXOXOXOXOXOOXOXGentrie

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 uncommon.........my 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