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.

Reply fro Rick Heil of SonicFlood

From: Rick Heil
To: Home
To: Todd & Amy Kaylor
Subject: hey from Rick with sonicflood
Sent: Mar 24, 2009 4:58 PM
hey Ashlyne, my name is Rick Heil with SONICFLOOd and i was diagnosed with crohns disease when i was 11 years old. im so sorry to hear about your struggle with the illness but our Lord Jesus Christ is the Healer... im sure of it! i was wondering if you had changed your diet and if you were taking probiotics and digestive enzymes?
if your interested to see my testimony please click on this link: http://www.youtube.com/watch?v=sh2txCYoTu0
the Lord has healed me and im living proof that He still does His wonders today...

PEACE,
Rick Heil

March 20th lab results

Well once again this week we got bad news regarding Ashlyne's labs. Her liver (ALT) is now up to 176, 31 is the highest they want to see. Good news her white cell count is up to 4.1/2100, which is very good and means no more face masks at this time. Dr Z is removing her from her immunosuppressant 6mp and ran a gamut of blood work and urinalysis on Thursday to try to determine for sure whether the 6mp is the cause or something else. Logic tells him it is the 6mp. We will not have results back for about a week as the 6mp test is sent to San Diego CA and takes a while to get results. Dr Z says unless something else is determined to be causing the liver to be so high he will recommend putting her on remicade. The one drug we have been trying to avoid due to the risk of lymphoma and high rate of infection that this drug causes. http://www.remicade.com/remicade/global/index.html

Ashlyne also saw a primary physician to confirm that she is not experiencing any other infections/illnesses that might be the cause. Dr Haberle did not find anything else wrong with Ashlyne.

Needless to say this is not good. There are so many questions and concerns. If Ash is non symptomatic at this time is Remicade ultimately the best decision. She has been unstable since she started on the medications (last June) and not until she was put on the restrictive diet did she get healing and go non symptomatic. Has diet been the controlling force? Once Ashlyne starts Remicade there is no going back, if you do not continue the treatments every 6-8 weeks the body will build antibodies against the treatment and you will become allergic and not be able to use this treatment. Remicade is the level 3 medication, there is not level 4, there is no where to go from here. She is 12 years old, what does this mean when she is 20, 30, 50, 60? What is the long term affect on her development, she is prepubescent and there are no long term studies on girls on this medication for long periods of time?

Please pray right now and whenever you think of my little girl and ask God for clear and decisive treatment if it is not His will to heal her. Pray as parents we can come together and agree on her treatment path. Pray for her current and future health. Pray for her strength to handle all this.

In His Grip,
Wendy

Ephesians 3:20-21 20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

Matthew 18:19-20 19 "Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. 20For where two or three come together in my name, there am I with them."

March 9th Visit to Children's

Today was another 6 hour round trip to Omaha to see Dr Zapata. Clinically Ashlyne is doing very well, she is having no symptons of her Crohn's. Weight wise he considers her stable, though Ash is not happy with her increased weight. Heighth he is okay with since May of 08 she has grown 2.4 cm, her medications can cause stunted growth as well as active disease, we will continue to watch growth. Her labs are still under close monitoring as there is still much instability and unanswered questions to why the flucuations. Her white cell count and segments are down again putting her at greater risk for infection, her white count was 3.69 and seg (nuet #) down to 900 today. She needs to stay away from sick people and should really wear a mask but she really does not want that. So we will monitor this. Her ALT (liver tox levels) are back up to 97. Two weeks ago white cell was 4.1/1800 and liver 41. Dr Z can not explain the up and down. We will do labs again next week.
He is making no real changes in her treatment or diet. The only change is he is dropping her to 20mg of prilosec instead of 40mg. We do not return until April 27th for now. In April she will be tested for her 6mp again unless something alarms him in her regular labs.
Not sure if no news is good news but for now that is what we have. Dr Z continues to say he wants to avoid putting her on Remicade so we will continue to monitor her.

Wendy

Before I Was Sick

See a girl with a pretty smile. See a happy girl with tons of friends. See a girl that's as healthy as a horse. See the picture.
Before she was sick she thought her life was perfect. She had great parents awesome friends and she had nothing abnormal about her. This picture was taken two months before she started to get sick. Looking at it you wouldn't tell that she would get very sick just two months later. When it came on she wonder what did she do to deserve this, months went on and lots of things were different. She got glasses, lost a ton of weight, didn't have the same best friends, and you didn't see her smile as much. She misses that girl very much, but if she hadn't changed she won't be the person she is now. A girl that trusts and relies on God.
That old girl is long gone and will probably never be seen again. But because she is gone I now have the perfect life with Jesus Christ. I might be very sick but I have the most perfect life.

Feb 26th labs

Ashlyne's blood work came back this week with improvement. Ashlyne's liver tox levels have gone down to 41 and her white cell count has gone up to 4.5 and a secondary level in white cell went up to over 1800 which makes her less at risk for infection. Ashlyne is not having to wear a mask all the time now, she still needs to be careful and protect herself is she is around people with colds, etc but she is doing much better. Ashlyne's sed rates (inflammatory levels) are at 17, not the lowest they have been but not considered an issue at this time.

Ashlyne will continue all her current meds and resume taking gentimiacin on March 1st and we will do more labs when we go to Omaha on March 9th.

Thank you for your continued prayers! Please specifically pray for medication balance, for her appetite to return, for this flare to completely resolve and for her to lessen her steroids and allow her to increase her solid food intake. Also pray for growth, that will be a huge signal that she is healing, last time we know of growth was September 07. She has gained all her weight back but has not had any increase in height.

Wendy

Week of Feb 16th - Labs...

Monday Ashlyne had labs drawn again. Tuesday we went into our primary doctor here in Kearney due to the increased number and intensity of Ashlyne's head aches. Dr Lindstrom (primary) is quite sure it is from her Entocort (budesonide) and she needs to increase how quickly she starts on Tylenol so they do not get out of control. Dr Z says he will continue to monitor them, he went thru past notes and she has complained of headaches for quite some time, they have intensified since Mid January, if they continue or get worse he may consider running a CAT scan.

Over all Ashlyne's appetite is still not what it was, she does not eat all her allotted solid foods even. Ashlyne's white cell count is still about the same, very low 3.9, her liver tox levels have come down from 96 to 71 so that is good news, she still needs to be below 31.

Ashlyne continues to wear a mask at school, church, youth group, Wal-Mart etc, her risk for infection and illnes is very high. Ashlyne and her friends Breana and Delaney came over last weekend and decorated masks to at least make them fun.

Hope- These stories encourage Ashlyne - Please pray

If you’re a fan of Christian music you’ve probably heard their name before. Sonicflood travels the world and performs before thousands. But the lead singer of the Grammy nominated group doesn’t let fame go to his head. Rick Heil’s mind is on one thing… lifting up the name of Jesus.

“It’s almost like eating lots of candy,” Rick tells The 700 Club. “I mean you get to spend time with brothers and sisters in Christ all around the world, sing worship songs to Jesus, and dance for the Lord.”

When Rick takes the stage, you’ll see a living, breathing miracle – a man healed of an incurable disease. Now he lives to tell about it… years of chronic pain, God’s healing power, and how he went from death to life.

“I guess I felt like my hope had been lost when I was growing up with the illness and dealing with it and really not feeling like I had any hope for a change in life,” says Rick.
Rick’s life didn’t start out that way. He was a healthy child with a passion for playing the guitar. But by age 11, the pain hit, and Rick began losing weight. Doctors found evidence of Crohn’s Disease, a severe intestinal disorder.

“When I was first diagnosed, I was dealing with a lot of pain I’d never felt before, and the pain is not in your arm or in your hand or your extremities. It is in the core of your person.”

Rick underwent multiple surgeries to remove eight feet of his intestines.

“As I got older and the disease continued to progress and I spent a lot of time in the hospital going through many tests and being fed intravenously for long periods of time. I really started to think that I was sort of alone in this.”

Bitterness and depression swallowed any hope of a healthy life, and his will to live began to fade. But at 15 years old, Rick surrendered his heart to Jesus.

He says, “I didn’t know about the hope of being healed. I was brought up believing that the day of miracles was over, and I really needed a miracle. Here comes this woman into my life saying, ‘Well, He still does miracles, and He’s gonna do a miracle in your life.’”

That woman was CeCe Nolan. Her radical faith changed Rick’s life, and she became his wife.

“She really was the first one to come along and say God’s gonna heal you,” Rick says.

CeCe adds, “Probably my biggest struggle with Rick’s disease is I wanted to see the healing quickly. I knew that the Lord had His hand on Rick but I wanted to see Rick free from the pain.”

Their faith was tested in 2004 when Rick’s condition worsened. He could no longer eat food by mouth. He had to be fed intravenously -- a cost of $5,000 per night.

“Being at the end of the rope, I let go and trusted in Jesus. He has a way of getting us to these places of brokenness where you have to trust,” says Rick. “I just layed it down, the anger the bitterness, the Crohn’s disease. I layed it down at His feet, and I said, ‘If you heal me, I’ll worship you and serve you forever. If you don’t heal me, I’ll worship you and serve you forever. Not my will but Yours be done.’”

Rick was still not responding to traditional medical therapy.

“The doctors that were attending me [were] really washing their hands of me, basically not able to do anything for me,” Rick says. “They were saying, if I had an operation, it would leave me with a short bowel -- meaning I’d be fed intravenously for the rest of my life.”

Rick wanted a second opinion. His search led him here to the Cleveland Clinic Digestive Disease Center in Ohio. It’s ranked No. 2 in the nation for treating intestinal disorders. It would be here where Rick would experience the healing he’d been praying for.

“I treat all my patients the same,” says Dr. Church, “but I felt an instant connection with Rick because of our shared faith. I always pray before every operation, before every colonoscopy, and I pray for my patients regularly. I know that God answers prayer.”
Dr. James Church operated on Rick to and removed some scar tissue. Then he told him what else he found.

Rick recalls, “But it was like, ‘So you didn’t find any CD. No there’s no CD in your body and there’s no need for you to be on those medications.’”

“ The scientist in me says he’s doing very very well, and I’m pleased about that. The Christian in me says this could very well be God’s work at hand,” Dr. Church says. “Certainly I think God does all the healing. I think it’s just a matter of what instrument He uses. Often it’s medicine and doctors and occasionally it’ll be a healing that we don’t understand.”

Today Rick has no symptoms of Crohn’s Disease. He can eat normally ,and he hasn’t required any further surgery or treatment. Now he’s on a mission to tell the world that Jesus heals.

“It’s a miracle to be without this pain and to have the kids jump on my stomach, love on them, wrestle with them and hug my wife,” Rick says. “Psalms 103 says, ‘Praise the Lord, I tell myself. Never forget the good things He does for me. He forgives all my sins and heals all my diseases. He ransoms me from death surrounds me with love and tender mercy, and he fills my life with good things.’ I want people to know that He’s a good father.”

6mp results

Dr. Zapata called Friday late morning. He got the results from San Diego for her 6mp test. Good news the 6mp does not seem to be the culprit of her liver and white cell count troubles but he still does not know for sure what is happening. Dr Z is going to run a panel of elements along with liver and CBC on Monday again.
6mp was 156, optimum effective levels should be 200-400
6mmp was 5200, the highest should be 5700 so this is in normal range.

He has Ash taking her 6mp again but has removed her from her flagyl for now. Ashlyne's head aches are increasing in frequency and intensity and Dr. Z is not sure what that is. We will once again sit and wait.

Wendy

Lab Results 2/10/09

Ashlyne had labs run again this week since last weeks labs were showing elevated liver levels. Dr. Zapata called last evening with the results. Ashlyne's liver levels are over 3 times the highest level, the high end would be 31, she is in the mid 90's. Her white cell count is down to 4, well below normal. Dr Z is taking Ashlyne off her immunosuppresant at this time until he gets the results from her 6mp test that was also run on Monday. This is the test that gets shipped to San Diego, CA and takes up to 3 weeks. He is going to try to get it rushed and have results by the first of next week. He is not sure the course of action at this time.

Yesterday morning before we got Dr's call Ashlyne woke not feeling well at all. She is nauseated and has no appetite. This continued throught out the day, waves. She did get her supplements down with great difficulty, she managed to get a couple of scrambled eggs down, jello, half a potatoe.

The 6mp (immunosuppressant) does have a side effect of liver toxicity. So much is up in the air at this time. We will have to wait and see.

Keep Ash in your prayers. Since we do now know or at least suspect her nausea is related to the liver she is going to try to make it thru her school day. She is doing about the same this morning.

Wendy

Detailed Update

Ashlyne had a 6 week check on Tuesday, Dr Zapata did not run blood labs since Ashlyne was a little dehydrated due to her having to fast for her ultrasound. Initial ultrasound looked like inflammation or thickening of the Terminal Ileum was still present, upon pushing Ash did experience some pain but minimal. She has still had no growth in height, she is up to 91 pounds but Dr Z is sure 8+ pounds is prednisone. She is off prednisone officially as of Tuesday. He is making no changes, we will go back in 6 weeks and monitor her blood labs until then and then run the 6mp and stool sample test again then. IF she remains asymptomatic and labs stay good we may make diet modifications in April. Ashlyne's headaches were better today but when she came to pick up her meds to go to her dad's she asked for Tylenol so they are still there but not as bad. A very exciting praise is the Crohn's and Colitis foundation called tonight and Ashlyne is 1 of 12 kids from Nebraska getting to go to California for Crohn's & Colitis camp in July. The camp is called the Painted Turtle, founded by Paul Newman. Dr Z did say on Tuesday he would sign her off and plan on her attending unless she goes into a severe flare. Pray she remains stable until after camp!!!

Awful Headaches

Yesterday my Doctors appointment went fine. He didn't change anything which is fine with me and right now the soonest I'll be off this diet is the end of March or beginning of April. Today I stayed home from school because I was dizzy and had an awful headache. it is not going away completely it comes and it goes. I wish I could go to the Chiropractor so that he could adjust me so that this headache would go away. If I am not better tomorrow mom is going to take me to the doctor. Please keep praying for me to get better and that my mom and dad would both find jobs. Keep checking on my blog to see whats going on.

1/9/08 Update

Dr Zapata Called today. Ashlyne's labs from Monday came in and her CBC (blood count) and liver tox levels came back within normal levels. Dr Z is still perplexed in Ashlyne's 6mp levels changing so much. At this time we will continue to taper Ashlyne off the prednisone, starting tomorrow Ashlyne will start on Budesonide, the steriod that is not absorbed like prednisone and is supposed to not bring on so many of the systemic side affects that Ash is being haunted with. Dr Z does not want to wait until she is off the prednisone, last time Ash went off the prednisone within a few days her symptoms started coming back, pain, blood etc. Dr Z wants to be sure she is covered with a steriod and there is no lapse in that treatment. The rest of Ashlyne's medication will remain the same. Ashlyne will remain on her 60% elemental liquid diet. Dr Z says he will most likely keep her on the diet until she has been symptom free for at least 2 months following the last time she takes the prednisone. Right now the soonest her diet will change is the first of April. As you can imagine Ash is not happy about that, she wants fruit sooo bad.

Ashlyne had a tough day today, she was made fun of by a boy, not terribly, she said it was more the way he said it than anything. We knew it was only a matter of time and have been so thankful that she has been left alone. Still it really heart her feelings and triggered a lot of emotions. Then top it off with her diet news. We talked thru it and she is doing just fine now. Continue to keep her in your prayers and ask for a hedge of protection be put around her when she is at school and that this was an isolated incident and not the beginnings of something.

Please pray for the insurance to come thru with payment for her supplements, we still do not have news that they will cover it. This new medication is extremly expensive, and both families could use the financial relief of insurance coverage.

Wendy

Jan 8th More results, still no direction

I spoke with Dr Zapata's office a couple of times today. I called in first thing cause Ashlyne mentioned last night after youth group she had been experiencing difficulty breathing off and on the last few days. She said there was no pattern and not if she was running around. Ashley with Dr Z's called back and instructed us to take Ash to her primary doctor in Kearney to be examined and they had gotten her stool sample results from Dec 19th. Her Cal-protectin (spelling is prob wrong) levels were elevated which is an inflammatory marker in the stool for Crohn's patients. UGH! So basically our exciting Dec 16th visit showing improvement was not the total picture, the visual looked good but the labs are not coming back very good. We are still waiting on Monday's labs, Dr Z does not want to make any decisions regarding her treatment until he gets those results. Back to Ashlyne's breathing issue, after sitting in the dr's office for over an hour, Dr Paysen could see no issues that might be causing the breathing issue. Her one thought was that Ash was starting to react to the Gentimiacin (antiobiotic) that she started back on last Thursday and suggested maybe putting Ash on Zyrtec and Benedryl if the symptoms increase or she started showing other symptoms. Dr Paysen was quite perplexed and wanted me to discuss her findings with Dr Z before we did anything. While Darin, Dr Paysen and I sat there and discussed all this, for some reason it came to me maybe it had to do with Ashlyne's head position. She had a breathing issue when we were in the waiting room, she was looking down doing homework. We mentioned it to Ash and she said that could be it, she has had increased swelling in her face and neck over the holidays and now that she is back in school she is looking down a lot more. Ashlyne is going to monitor the symptoms now in relation to if she is looking down or not. I am relieved that it may be something so simple. Dr Z in the meantime is going to have Ashlyne continue to drop off the prednisone, starting tomorrow she will drop to 15mg for 5 days, then 10mg for 5 and so forth until her next appt on Jan 27th. Hopefully Monday's lab will come in tomorrow and we will hear something more positive.

Wendy

New Years Resolution (kinda)

This year my New Years resolution is more like a prayer or hope. It is that I get better. Right now it is up to this disease to see what I am doing later this year. I really want to go to a camp for kids with Crohns and Ulcerative Colitis but I have to be in a stable state and we have to have a doctors ok and we are approaching the deadline so it doesn't look like I am going to be able to go this year which I am really upset about. Later in the summer I want to go to Phoenix to visit family and celebrate my coulins birthaday with her. I also to be better for my thirteenth birthaday so that my mom can make me a normal birthday cake. At the end of the year we are wanting to go with the Kearney High Band to New Orleans for their band trip. I really want to go so that maybe I can see some of the damage from Hurricaine Katrina and to see what a band trip is like before I get into highschool. Please keep me in your prayers as you can see that I am not doing as well as I should be right now. Also you should come up with your own New Years resolution because it will heip you reach your goals in life.

Lab Results and Dr Zapata Call

Bear with this one, it is complex to understand the lab results.

Dr Zapata called today with blood results from Ashlyne's 6mp blood test taken when we were in Omaha on Dec 16th. The 6mp test is run in a lab in San Diego, it is the only lab that runs the test Dr Z needs to see, so it is no uncommon for these results to take 3-4 weeks. The 6mp is Ashlyne's immunosuppressant drug, it has two different levels they watch for the control of her Crohn's.

When she was last tested Ashlyne's levels of the 6mmp was almost twice the hightest level they want. 6mmp is supposed to be below 5700 and she was well over 9000, I think 9800. Even though it tested so high they felt the benefits of the 6mp outweighed this negative of toxicity, or at least in the short term. The other level has a target level of 200-400. When Ash was first tested after being on 6mp for 8 weeks (Aug) she tested at a level of 186, so they increased her to 50mg daily of the 6mp. When Ash was at the 9800 6mmp level she actually tested in the 300's so that is why they kept her at 50 mg daily cause it did get her into the effective levels.

Dec 16th lab work came back with her level now down to 142 and her 6mmp is down to 4077. 6mmp level is now good but her other level is too low for effectiveness of the drug. This could be why her sed rates were slightly elevated last week again. To Dr. Zapata this does not make sense since from her ultrasound in Dec she has had healing. He does not understand if she is on the same levels of drugs (6mp) why are her levels changing so much. Normally if a patients condition was worsening they would consider that she was not absorbing the medication due to a flare. Dr Z is waiting for the results from the blood work we took on yesterday.

He is also considering changing Ashlyne to a different steriod than prednisone called budesonide, this does not absorb into the body as much and does not have the systemic side affects that prednisone has. He feels Ashlyne is a good candidate for this drug. If you read up on the drug its side affects are really not much different than the prednisone, I have not looked at the chemical info on it to understand the system affects that Dr Z mentioned.

Ashlyne's face is more swollen then ever, it is moving down her neck more and more. Her body hair is growing and her hair line is starting to connect with her eye brows, along with more facial and body hair, this is not making this little girl very happy. Ashlyne is experiencing more frequent headaches also. She weeped in my arms last night and this afternoon wanting things to be different. So we are now waiting till Wednesday or Thursday when her labs come in before Dr Z makes any changes.

Please pray that God's will will be done in her treatment, we want to pursue Chiropractic treatment as we have meet multiple Crohn's patients in our area who have been helped tremendously by receiving chiropractic treatment. Due to custody issues this is currently not possible. Ashlyne wants to try chiropractic anything to help her with her disease and improve her quality of pre-teen life. Please pray that this will become an option of treatment in coordination with Dr Z's expertiese. I know many of you have sent us email links and articles about the many successful alternative treatments and we thank you so much for your support and interest in her care. Steve and Jo Wood have been so pro active in seeking information for Ashlyne's health, we thank you for the input from you and your Chiropractor. Minda Hampton has given us tons of great links and leads. Thank you. Please continue to let us know of any new information, we have to try everything we can to help her.

Please pray that Ashlyne will continue to be encouraged by prayer and her relationship with God and she will not become discouraged. Pray for her healing, perseverence and patience with this all. Pray that her diet will continue to satisfy her and that the insurance will come thru and cover the elemental supplement she is on. I am sorry for the lcomplexity and length of this blog, trying to explain her lab results means nothing if you have nothing to base them on.