My First Camp Expirience

I thought I would tell you guys about camp a little bit. Traveling day went very well. When we got to camp I met the girls in my cabin and my counselors and unpacked. We started to play a game but then I and a couple of other girls went to the dinning hall to check in. We had to wait before we could see our nurse so we got to dance. Then we went to the well shell which is where the nurses and the dr.’s stay to meet our nurse and the rest of our counselors. Then we went to dinner and got to make friends and get to know the girls in our cabin. After that we had to go to bed. All the days have run together so I will just tell you the different activities and our daily schedule.
Here are the different activities we did throughout the week. We got to go horse back riding down a little trail and I rode a horse named pharaoh. There was also boating and fishing I went canoeing both of the times we went. We did this activity call magictivities where we were pretending to be warrior princesses and we had to work together to do different activities which was really fun. There was also swimming in a shamu shaped swimming pool. There was creative arts where we got to act in different activities. There was music which was where we got to try different instruments. There was disco also known as discovery. We made crystals and colored paper it was really fun. There was also archery and a ropes course I loved the ropes course it was so fun going dawn the zip line and walking across different ropes! Here was our cabins daily schedule. We would get up and get dressed and go to breakfast. After breakfast we would have cabin clean up which is where we would clean up our cabin so that we might win the golden plunger in our age group. After cabin clean up there would be 2 activities and then lunch. After lunch we would have chill time the first 45 min we would sit on our bed and relax or take a nap the last 45 min we could go out to our common room and play games. After chill time we would have an all camp activity like silly Olympics and a scavenger hunt. After that we would have turtle time which is where we would relax and get ready for dinner. Then we would have dinner and after dinner we would have another all camp activity. But this activity would go along with the camp theme which was the museum of madness like one night we had to put exhibits which were pretty much people dressed up in costumes but we would put them back in there exhibit! Camp was so fun and I cant wait to go back next year.

Last Weeks Dr Appointment

My June labs were great! White count and hemoglobin were the highest ever and my inflammation rate was low and liver normal, yeah!!! Last week I had an appointment in Omaha. It went very well and I can now start having fruits and vegetables. I am very happy and I also got to get rid of one elemental drink. I think that was the best doctors appointment I have ever had. Also last week I got to meet some of the people I am going to camp with. Just meeting some of the people made me even more excited to go, I cant wait for the 14th. I am also very excited for the 4th of July it is one of my favorite holidays. I have been doing very well with the fruits and veggies other than the banans did not agree with me and can have watermelon, canned peaches and so far lettuce! I think this has been a very productive year which excites me! I have also grown 1 centimeter since my last visit and am now in a good weight range! Thank you for all the prayers!

The Past 2 Months

May: School ended in May ,finally, and I went to Phoenix to visit family. i enjoyed my time there very much we did something everyday. When my flight landed we jumped in the car and flew to my aunts house where she prettied me up I had no idea why. on our way to where ever we were going my Aunt Amy told me I was going to get my picture taken. To see the pictures go to www.vanesaruizphotography.com/ and click on your life captured and type in prettyashlyne. While I was there I also got my toes done, went shopping, met grandma's church friends, went to a water park, and saw Night of the Museum 2. I was sad to leave my cousins, aunt, uncle, Grandma, and Grandpa but I was ready to come home. But, it just so happened I saw them the next week because my 94 year old great grandma fell and the nursing home told us she was probably going to die. Well it turned out to be a false alarm so they all came and visited the rest of my family. On June 27 I get to meet the people I am going to camp with in July. I am really excited. You are and officially caught up with my life. Thanks for reading my blog. Oh and I almost forgot i am doing very well and have absolutely no problems!

My Fun Report

Last week a friend and i did a report on Denmark. Everyone had to do a report on a different country of our choice. We got to have partners and of course mine was my best friend Katerine. We had lots of fun learning all about Denmark and its people. We decided to visit there someday. After everyone gives their report she will pick five people from our team and the other the other team. And guess what she told us, we were gonna go to the library for the real Culture Fair where most of the school will come and look at you report and posterboard. We dressed up and made aebleskivers for people to try. It was lots of fun. We cant wait to go to the library. Sorry I cant talk more but I got to pick up Katherine for a sleepover. Tlak to you all later.

Praises!!!

Dr Zapata's office called yesterday regarding Ashlyne's labs taken on Monday.
Liver - 35 NORMAL
White Cell - 6.1 NORMAL
Sed Rate (inflammatory marker) 5, I think this is the lowest we have seen it.

YEAH!!! This is fantastic news, this is the best her labs have looked in months, course she has been off her immunosuppresant for over 2 weeks now. Please do not stop praying, we want to be sure her Crohn's remains stable and non symptomatic. She continues to feel well. Dr wants to run her labs one more week to be sure they remain good and then she does not have to have any blood work until May.

Wendy

April 1st visit - no fooling

On Wednesday we went to Omaha and meet with Dr. Zapata, he spent well over an hour and half with us reviewing Ashlyne’s history and answering our many questions and concerns. We, all four parents, we very pleased with how the visit went. Dr Zapata did allow a very open dialogue and listened to our requests of trying diet modifications and drug modifications before going on Remicade, he still believes that ultimately Remicade is Ashlyne’s next step. But he is willing to keep her of the 6mp (immunosuppressant) and keep her on her Entocort (steroid) for now and make no other diet or drug modifications to see how she stabilizes. Ultimately we will do nothing until her liver goes down, this is the greatest concern right now. We essentially are facing an unknown with her liver, our local doctors office messed up on the 19th and did not order the right blood tests so we can not compare her 6mp with results with her liver since she has now been off the drug for 2 weeks. We are starting her with the chiropractor on April 20th to begin treatment. If she remains stable on diet and chiropractic and entocort, her liver goes back to normal then we will begin weaning her off her Entocort as well. Ashlyne has been on steroids now for over 9 months, minus 7-10 days she was off at the end of September. If she continues to remain stable once off the Entocort then we are going to just treat with diet modifications, antibiotics, supplements and chiropractic.

All this can change if she begins to regress or have a flare. Both doctors are willing to monitor her labs as we try this route, weekly sed rates, CBC’s etc. Even endoscopy’s/MRI’s if necessary. We will continue to face variables on a regular basis in her treatment but are feeling very good about being able to back her out of some of the medications to try to find what has actually helped her the last 3 months of no symptoms. Since Ashlyne is clinically well as the doctors put it they are willing to go this route.

We are still considering changing to Dr Prestridge on a full time basis not because we are unhappy with Dr Z, Ashlyne just feels more comfortable with a female doctor especially entering her puberty years and Ashlyne could understand her better too. We are waiting on Dr P to review Ashlyne’s entire file and get back to us on her further recommendations and then we will make our final decision on whether we will change doctors. At this point we will be able to leave Dr Z on a very good note and ultimately the female doctor issues will be why we make the change.

There is a lot in this posting and without getting too windy, which I have already, and too technical this is a pretty good explanation. Feel free to ask questions if you do not understand something.

Our continued prayers are for healing for Ashlyne, her liver to be okay and not damaged, her white cell count to stabilize and not cause bone marrow issues, that we have no flare ups with going off the medication and that she will remain feeling symptom free in regards to her Crohn’s.

Fondly

Wendy

Second Opinion Visit

Yesterday we went to Omaha to Boys Town and interviewed a new doctor to get a second opinion on Ashlyne and her treatment. All four parents went. We spent a little over an hour with Dr Prestridge, she is a lovely woman with over 18 years in Nebraska treating pediatric Crohn’s, she was at Children’s for 8 years and now at Boy’s Town for 10 years. We all really liked her, Ashlyne was very comfortable and she put many of our concerns and questions at ease. She is very willing to work with us as we investigate some alternatives to Remicade and definitely wants to try some other drug combinations and run some other tests before she would ever put her on Remicade. She is also willing to monitor as we try diet modifications and chiropractic and medication modifications to ensure Ashlyne’s stability. Much more receptive and open than Dr Z was when we brought alternative care up to him last Summer. We will meet with Dr Z tomorrow morning with Ashlyne to cover the same concerns and questions.