2012 and High School

            Hey guys, It has been awhile since I have updated my blog. I just wanted to say sorry about that, I have been really busy from high school. Well not a lot has been happening since my last video that I have posted with Richa. High school has started though! It's very hard getting used to the schedule and waking up at 5:30 am, but little by little I am getting used to it! It is also hard because I have been going full day and I haven't gone for the full day at school since the beginning of December. That is almost a year ago, thats crazy! I can't believe that I have been a "TUBIE"for almost a year thats crazy! I thank everyone for their support. It's has been a very hard 2012, but I am hoping 2013 will bring me good luck and and easier time. I am not complaining though about how I am feeling. I have gained over 30 pounds and I have grown height wise a lot too! I am currently 91 pounds and 5 feet and three inches!
             The second part of my surgery takes place on November 7th. I am although a little nervous about that because I had a pretty bad experience for part one. You can tell me all you want that you don't have to worry about it and that it wont be half as bad, but you didn't go through it and you didn't know how I felt. So, I thank everyone who cares and who says that you will be fine. Yes I will be fine, but on the inside I'll be scared, but it will be fine. I just hope this whole process will be over soon and I can just worry about friends and being a normal teenager and feeling great! Although I am far from normal hahaha!
              I definitely hope that high school will be a good experience for me, I have already had some accidents there with my tube and at home also. I have gotten so frustrated at point where I just have a complete melt down, but I just have to keep looking at the bright side of things. I will confess though that I am not hooking up as much as I should. It's just getting annoying and tiring but if I don't I'm going to start loosing weight again and becoming sick, so I'll have to learn the hard way if I don't start getting back on track. Well lets see what 2013 brings I'll update you guys in a little bye!

               

G-Tube!!! and Updates!!!

Please Watch Untill the end, I know it's seven minutes and it's silly but the end is important and this video will put a smile on your face!! Talk to you soon!

Take Steps & Be Heard update

Hello all, just wanted to give you a quick update on our fundraising efforts. On June 3rd, our team (Sophia's Soldiers) is participating in the Liberty State Park Take Steps for Crohn's & Colitis walk to raise money for CCFA (Crohn's & Colitis Foundation of America). Our team goal was to raise $1,500. I am happy to report that not only did we reach our goal, but we are now closing in on $2,000. WooHoo!


I would like to send out a very special THANK YOU! Thank you to all of you who will be walking with us, and thank you to all of you who have donated and helped us reach our goal. I am truly blessed to be surrounded by so many wonderful family and friends.  


The money we raise will fund research, raise awareness and change lives. I'm hopeful that one day I will be able to live a normal life that is free from pain and fatigue.  There is still 5 days left. If anyone would like to donate and help out, follow the link below (and thank you as well)


http://online.ccfa.org/site/TR/2012TakeStepsWalk/Chapter-NewJersey?px=2620205&pg=personal&fr_id=3188

Calling all Walkers ... Take Steps & Be Heard

1.4 million Americans live with Crohn's Disease or Ulcerative Colitis and I am one of them. I was diagnosed with Crohn's in March of 2011 at the age of 12. Crohn's is a painful and incurable disease that attacks the digestive system. Many who suffer from Crohn's also deal with complications such as liver problems, anemia, joint pain, fatigue and other autoimmune issues. 
On June 3, 2012, my family and I will be taking part in the Liberty State Park Take Steps for Crohn's & Colitis to raise awareness and much needed funds for valuable research. If any of you would like to walk with us, or If you'd like to donate to our efforts and support CCFA, follow this link to donate online  -or-  leave a comment below and I'll send details on how you can help.


http://online.ccfa.org/site/TR/2012TakeStepsWalk/Chapter-NewJersey?px=2620205&pg=personal&fr_id=3188


CCFA (Crohn's & Colitis Foundation of America) is very important to my family and I. When I was diagnosed over a year ago, CCFA was there to help. Not only did they provide support for me and my family, but valuable resources and information as well. Especially during a time when we nothing about this disease.


Thank you, and a special thank you to those of you who have already donated or joined our team. Walk with us to find a cure for Crohn's & Colitis!

I can eat again ... YEAH!

Hey guys, sorry it's been so long since my last update but there's lots to talk about so let's get to it. On April 10th, I had my monthly follow up visit with my Crohn's doctor. All of my levels were good and I put on another 5 lbs. After 3 months of Enteral Theraphy and continued improvement, my doctor finally gave me the OK to re-introduce food. Woo Hoo .... BRING ON THE CHICKEN SOUP!


After Dr. Leiby gave us the good news, we then meet with Diane who is a nutritionist. Diane basically told us that there were no real restrictions on what I could eat. You see, food is not what causes the problems in my digestive system, it's my immune system that's the problem. With the exception of some milk and cream based foods, (because I'm lactose intolerant) I should be able to eat what I want. Diane's best advice was to eat in moderation and listen to my body. My body will tell me if what I eat will be good or bad for me.


Then, we talked about a schedule. With the Enteral Nutrition, I take in 1750 calories a day through my feeding tube. Instead of doing 100% Enteral Nutrition, we would scale that back to 80% Enteral Nutrition and the other 20% of my calories would be made up in small meals throughout the day. I was both excited to be able to eat again and nervous at the same time. As much as I wanted to eat, I didn't want to be sick again. And, not knowing how I would react to food scared me a little.


Eating has been a little tough for me. When I first started to eat I had some belly pain. After 3 months of not eating any solid food, my stomach just wasn't used to it. It was hard to figure out what was causing the pain because I was trying so many different kinds of food at once. I was getting a little discouraged and swore that I was just not going to eat at all because it wasn't going like I thought it would. Then my parents suggested that instead of eating so many different things at once, I should just introduce one food at a time. This way, if something doesn't agree with me, it will be easier to figure out what it is. It's been sort of a challenge, but I know keep a food journal. In my journal, I write everything I eat, how much of it I eat and how it makes me feel. Now I know if what I'm eating is a good food or a bad food. Keep your fingers crossed and I'll keep you posted on how it goes ... bye, bye!

CCFA - Crohn's Fashion Show!

Hey guys, guess what? I was in a fashion show! On March 27th, my parents and I attended a fashion show to benefit CCFA (Crohn's & Colitis Foundation of America). The show was sponsored by Salon Amici who provided hair and makeup for all of the girls who modeled. Not only did I attended the event with my parents, but I got to be one of the models as well. My neighbor Arlene had a pink gown that she let me borrow for the show. After a few alterations, it fit great and looked awesome ... I loved it!  And, as I walked down the runway with my feeding tube, it reminded everyone of why they were there in the first place. All the girls who modeled, showed their support for me and the cause by wearing one of my Feeding Friends Stickers on their arms. They all looked absolutely gorgeous. It was a great night and I had so much fun. The women who ran the event were really nice and they invited us back for next years show ... can't wait!

Couple Weeks in of School

          Hey guys, sorry I haven't updated my blog in awhile. Well school has been going great! I just finished a huge project in my Connections class. The project was called 'Restaurant Wars' and it was a group based project. For our restaurant, we had to create a name, logo, business cards, menu, recipes for a cookbook, uniforms, advertisement/commercial, and then finally present everything at an Expo along with samples of our food. Our restaurant was called Sprinkles; "Put a bounce in your step and a sprinkle in your smile". It was a lot of work, but my group and I had soooo much fun doing it.
       
          I have been having a little trouble with catching up in some classes, but I am doing okay. I am still doing the partial day though to help with my transition back to school. I still find myself getting a little tired as the day comes to an end for me. Overall, I am doing just fine with my schedule. I am seeing all of my friends and I love it. School is going okay, and even though I am not 100%, I am still trying my best. The third marking period ends soon and I will be sure to post my grades! Bye guys!

1st Day Back to School!!!!

     Today is my third day of being back to school. I am definitely adjusting well and I am so glad to be back. On the first day of school I walked up the stairs to my locker just as the bell rang and the hall filled with all of my friends and teachers. I felt like there was no air to breathe,  everybody came over at once ... haha. I felt like a celebrity and it totally made my day. A couple of days before going back to school my dad gave my teachers a bunch of the stickers I wear so that other people can wear them. I was so surprised to see how many people put them on their face to show their support for me! I was so excited, I felt like I blended in. Then, 4 of my best friends gave me a huge gift. I now have three pounds each of mints, jolly ranchers, and flavored lifesavers. When am I ever going to eat all of that?


    After being in school for awhile, my pump made the loudest beeping noise it could possibly make and everyone was looking around the room to see what was making the noise ... including my teacher. The battery on my pump was dead. I was so nervous about going back to school that I forgot to plug it in the night before. So, I had to go to the nurse's office and unhook. After that class ended, I went down to the gym room where I got to see even more of my friends. I was so happy to see everyone and had a GREAT first day. I was confident and I had faith in myself and sometimes that is all you need. That's all for now, I'll keep you posted ... Bye!

Doctor Visit 3/6 - GOOD NEWS!

           Just wanted to give you all a quick update. Went to my monthly doctors visit on Tuesday, March 6th, and the Enteral Therapy is working. In just 4 weeks I gained 5 ponds, tipping the scales at a whopping 76 lbs. And, the best news of all is that as of Friday, March 2nd, I have been medication free. I stopped taking my last medication on Friday and so far, I've been feeling good. One more month of just Enteral Therapy and then we can start to reintroduce food. Not sure what I'll be able to eat, but I'm looking forward to it. Keeping my fingers and toes crossed that everything continues to go well. That's all for now, I'll keep you posted ... bye!

School Time!!!

            Well today I went to school for a meeting with my guidance counselor, nurse, and my assistant principle. We worked out a schedule for me to go back to school on a half-day basis! I AM SO EXCITED. After the meeting, I went upstairs to my locker to make sure I remembered everything. While I was upstairs, I ended up going into all of the classrooms on my team. Everyone was so surprised and excited to see me, and I got so many 'hugs' and 'warm welcomes'. I got to see all of my BEST friends and it made me so happy. I also got to see my best friend Lauren whom I haven't seen in almost a year! There is now a countdown on the board in my homeroom until I come back. Oh, and I forgot to add, I am going back to school on March 12!


My part-time schedule will be from 10:00 am - 1:15 pm. Whatever academic classes that I miss during that time I will continue to get at home through home instruction. After being out of school for nearly 3 months, this will help make the transition back to school go a little easier. Now, I just have to work at getting up a little earlier.


Well that's the good news, now here's the bad news. It's been 4 weeks already and I have to change my tube again this weekend.  It's annoying, but I have to do it. Also, on the 'good news' side,  I am stopping my 6mp tonight. For those of you who don't know, 6MP is the last medication that I am on! I never thought this day was going to come. Ever since I got diagnosed with Crohn's disease a year ago, I have had to take MANY medications. It will be very strange going to bed every night without having to take anything. Well I am sorry that I haven't posted in a while, but I have been a little busy. My next doctors appointment is on the 6th and I hope that everything continues to go well. As always, I will keep you guys updated ... bye!

Hospital Time

               Well yesterday was an absolutely terrible day. It all started when my dad gave me my antibiotics because I now have Strep Throat. Then, he explained that he would be gone for only a few hours because he was giving my uncle a ride to the airport. Normally I would have just gone back to sleep, but after he left at 10:30 I started to get a major headache. It felt like someone was driving a nail behind my left eye and the pain was making me very nauseous. I was home alone and the pain was getting worse and I didn't know what to do. My dad wasn't going to be home for at least another two hours and my mom was working and I couldn't reach her by phone! I was starting to cry because I had no clue what I was going to do and I needed my mom or dad. I had just got off the phone with my dad and he told me if you have to throw up don't worry about it, just go in the bathroom. That wasn't exactly all that I was worrying about. I was worried about my tube coming out. My dad said not to fight the urge to throw up. If the tube came out, we could just put it back in now that I knew how to. So, right after I got off the phone with my dad I went straight into the bathroom. I threw-up numerous times, about four times in the first round alone. Thankfully, my tube stayed in and I was really relieved about that.


                After my first round, I went down stairs and got a couple of things. I went into my kitchen and got a bucket to throw-up into, tissues, my cell phone and finally a home phone. I moved everything to the recliner in my living room. I propped myself up and turned on the television. I was hoping to get my mind off of my stomach and headache. So, I watched the price is right and the volume of course was turned down low. I spoke to my dad many times and he assured me that he was rushing home as soon as he could. Both he and I left many messages for my mom which thankfully she got. Her ringer had been turned off because she was teaching a class and she didn't realize that we were trying to reach her. As soon as my mom saw all of the missed calls, she called back and rushed home right away. I was relieved that one of my parents was coming home. Then, I felt it coming up again. I burped which led to gagging which led to throwing up ... round two.


              I threw up several more times in round two. It was absolutely terrible. My mom finally got home and emptied the bucket, I was too weak to get up and do anything. Later I sort of just hung out in the chair for a little. The headache was still there and so was the nausea. I knew I wasn't done throwing up. My mom called my Crohn's doctor to explain what was happening. My doctor was concerned that I was getting dehydrated and told my mom to get me to the Emergency Room. After my mom got off the phone, round three came. I threw-up again and it seemed as though it wasn't going to stop. I knew if I didn't get rid of my headache, I wasn't going to stop throwing up.


               As round three came to an end, my dad walked in the house. My mom and dad went into the kitchen to wait to hear back from the doctor. She called back and said Dr. Coswell is waiting for you in the emergency room. My mom then talked to my dad about a couple of things and had something quick to eat. I decided to put my head underneath the dark covers and shut my eyes. It was the first time I was able to shut my eyes since 10:30 in the morning. I sort of fell asleep and then my mom woke me up and said "Come on babe we have to go to the hospital." I was freaking out because I didn't want to go into the car. But, we put a bucket in the car, and then got everything thing else ready and left. I got even more sick in the car. I was really in a lot of pain, and the fact that it was a very bright, sunny day didn't make it any better. The drive over seemed to take FOREVER, but we finally arrived at the hospital. Dad dropped mom and I off at the E.R. entrance and went and parked the car. We signed in and I got my blood pressure taken and my temperature. The woman at the front desk then escorted us to my room. I laid down and then the doctor came in and we figured out what I was going to get. Next, the nurse came in and gave me an IV needle. From that she took 3 vials of blood and hooked me up to some fluids. I was pretty stable but my headache was still there.


                 The nurse gave me medication for my headache, which turned out to be a migraine. She also gave me medication for my nausea, and lastly an antibiotic for Strep Throat. All of those treatments were given through my I.V. The medicine made me feel tired and loopy and although I hate that feeling, at least my headache and nausea was going away. I almost fell asleep and then another doctor came in and talked to my parents. I was really thirsty so I asked her for some apple juice. After drinking my apple juice, I woke up a little and watched some T.V. I got my blood pressures taken again and I was starting to feel better. After a little while longer I was able to leave. I was still not 100% but I felt much better, and more important, my migraine was gone. All in all I spent about 3 hours throwing up and about 5 hours in the emergency room. What a way to spend the day.


              My doctor wrote me some prescriptions for my nausea and said if you get another migraine to take Tylenol or Motrin and nap. See that's what I tried to do in the beginning but, I threw up the Tylenol and I wasn't able to shut my eyes. After a long day, I went home and up to my room. I had an Italian Ice and watched the Backup Plan. Overall it was a horrible day and I pray that I never have another day like it ... in my life!

New Tube, New Side

              Yesterday was Saturday the 28th and I had an appointment with my home healthcare nurse Tracy, to change my tube. I am not going to lie, although I had it in once before I was still nervous about changing my tube again. Can you believe it, it has already been 4 weeks since we started Enteral Therapy! Well it was almost time. Tracy was coming to the house at 4:00 and it was 3:55. The dogs were barking, Tracy was here and it was now time to change the tube. I was getting REALLY NERVOUS.

However, I knew that because Tracy does it so fast, it would be over and done with in about a minute. Then, the words that came out of Tracy's mouth really took me by surprise. She said "Okay, you need to go and get your little mirror because YOU ARE PUTTING THE TUBE IN YOURSELF." EXCUSE ME ... WHAT DID YOU SAY? Yes, Tracy just told me I had to put the tube in myself. I was like REALLY, and I just could not believe what I just heard?

Still not believing what I had to do, I went upstairs and grabbed my mirror, went back into my kitchen and sat down. I had to put the tube in my left nostril so that I could give my right nostril a break. After a few tries, I realized that the tube kept on getting stuck in the same spot. I was ready to cry I was really upset and now my nose was irritated which made getting it in even harder. My mom even had to leave the room, she was ready to cry.

Then, I tried one more time and still nothing. This just wasn't working, but I was going to give it one last try. This time I twisted and pushed and again it got stuck. Finally, my dad told me to push it up and helped me to get it past the part where it kept getting stuck. IT WORKED! Once you get it through your nose, it's easy. Then you just push it down. It was really stressful, but I did it and I am proud of myself! Well at the end it was all good because I got a monkey sticker to put on my face. Now I can say that I put the tube in and took it out all by myself ..... hahaha bye!

The Good News!

              Well I told you in my last post that I would write a new post after I went to the doctor's. So, this is what this post is about. In the many times I have been to the doctor since last year, I have never ever received good news. But, today was different! I GOT GOOD NEWS!!!!! I have gained exactly 1 pound and have grown a half of an inch since my last visit a month ago. I really don't see what is so special about that, but my parents are thrilled. My mom even said Yay were going to have "A half Inch party"! Not sure what thats supposed to mean but we never did. But I will take good news over bad any day. I am finally glad to say I am progressing in my health and not declining. Well I have to go take a shower! Yipee haha bye!

Update on my Life!

            My weekend was absolutely great! Three of my best friends came over and we had such a great time. I got all caught up on what's new in school and all the latest talk! Haha! I just recently finished my first week of home instruction and it went really good. Home instruction is when my teachers come to my house until I am well enough and ready to go back to school. Doing my school work at home is a little weird but it's also pretty fun. I find it really helpful because I have the teachers all to my-self. I find I'm getting more work done and in less time too. I really miss my classmates though and I really hope that I can be back in school soon. I have a doctors appointment tomorrow and I am really hopping everything is going to go okay. I am really really hoping that I can get back to school really really soon. I miss everyone in school and I am so glad I got to see some of my friends! I will definitely update you when I get back from my doctors appointment. Night!

Sinus Infection :(

          For the past week I have had a sinus infection. I really can't get rid off it, because I am on medication that is an immune suppressor. That means it slows down my immune system, which makes it harder for me to fight off infections. See, part of Crohn's disease is that when my stomach tries to break down solid food, it doesn't know what's good bacteria and what's bad bacteria, so it attacks everything. That's one of the reasons why I have had so much stomach pain in the past. So, I now have had a sinus infection that's been lingering for that reason, but I am feeling a little bit better today. My hero throughout this infection is Vicks vapo rub. I think it's magic because I rub it on my chest and then two seconds later I already feel that it is working. It un-stuffs you and works fast. I also kept my box of tissues and brought it every where I went, and thanks to Tylenol cold I am feeling better. Because when you have a tube coming out of your nose, it makes it TEN TIMES HARDER to blow it! Well that's my life as a tubie so far and will kept you posted. Bye!  

Home Instruction:)

           Today is Monday the 9th and I start home instruction. Home instruction is where my teachers from school come to my house and teach me instead of me going to school. I have a few reasons of why I am not going to school, but there is one really big one. That reason is I am later on going to be coming off a medication and I don't know if that's just going to make me more sick, so the safest thing to do is stay home. Today I have Connections and Language Arts. I have different teachers come in at different times everyday! So, I really am a little excited about how this is going to go and also getting back to school work. I miss my friends, but I really need to focus on getting better right now. Well My first teacher is coming at 3:45 and the subject is connections, but Mrs. Kopp is sick so Mrs. Heller my language arts teacher is covering for her. Thanks Mrs. Heller and feel better Mrs. Kopp! I am going to get my school work ready so bye guys!

Update Jan. 5, 2012

          Today I didn't do much of anything. I had gotten up at 10:30 which is early for me because I am still in the habit of going to bed at midnight and waking up at noon. I then went directly into the shower after that, but something didn't feel right. I felt weak to stand up so I just took a bath. After that I went right into bed again. It seems that I must of caught a cold because I have been sneezing and my nose has been running and my head feels like it's going to explode. My cousin had just passed away a few days ago and was supposed to go to his wake but because I wasn't feeling well I wasn't able to make it. The rest of the day I just chilled out and watched netflix with my brother. I just took it easy for the rest of the day. Now I am just hanging out with my parents and we are just talking and reading in our warm and cozy house! Well it's bed time, goodnight.

Getting out of the house!! :)

          Yesterday was Monday and it was definitely a good day! It was the first day that i actually went somewhere out of my house and the neighborhood. I went to the Palisades Mall! It's so big!! My cousins had invited me the night before to come with them and go to a place in the Palisades mall called Fun City. When we got there we first did something called magic Quest, and it was great. There was an arcade, lazar tag and much more. But when I went into lazer tag I had to wear a vest over my back-pack. It was pretty heavy, and every-time I got shot it vibrated and that made me feel sick, so I stopped. I had gotten a lot of stares which at some points made me feel angry and annoyed but, I am strong and got through it! Hopefully from now on I will just improve on my health and will be able to go to more places and feel confident and good!

3 Days after the tube!!

               Today is my third day into my journey with the tube. But, I think we should start from the beginning. When my nurse Tracy came she put in my Tube. Oh boy was that uncomfortable. I gagged and coughed and everything. The rest of that day I just stayed on thew couch and watched movies like Dolphin Tale. I then went to bed late that night because I was in a lot of pain. The feedings were making me sick, so, I unhooked the formula bag for the night and went to bed downstairs on the couch, with my mom on the recliner right next to me. The next morning I woke up at 5 a.m. By then, I could feel that I was so much more used to the tube already! So, I went into the kitchen hooked myself back up and then went to bed again. The second day was then New Year's Eve. I wasn't feeling to well all day so I was a couch potato. then that night I took a break from my feedings and went across the street to get away. I had a great night and thankfully was feeling okay!
               Today is the or shall I say was the third day. My mom said the color of my skin on my face came back and I had a lot more energy. My cousins came over today too.We had a great time. I have a back-pack specially designed for my pump and IV drip bag. So, I can go many different places with my pump so that I can continue my feedings. At night which is right now for me, is when I change from my back-pack to my IV drip pole. I am really hoping that by tomorrow I will be feeling a lot better!

Friday December 30, 2011

               After many days of deciding and thinking I have chosen to do Enteral therapy. Lets just say it benefit me a little more! Well today is Friday, but many of you don't know what that means. That means that my personal nurse Tracy is coming to my house and putting the tube in me. At this time I had just finished my last meal from my favorite place to eat in town and that is Panera! I had chicken noodle soup which is my absolute favorite and also Caesar salad and Panera's salads have amazing croutons!!! Although I didn't really enjoy it that well because I am not feeling to good. I have many mixed feelings about this tube, I am excited, I am nervous and I am a little scared about it. I will just have to tell you how it goes a little later when I am feeling better to write again. Well my nurse is here wish me luck, got to go Bye!