Crohn's Kids Nebraska

My First Camp Expirience

2009-07-29T10:29:00.002-05:00

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

2009-07-01T14:43:00.003-05:00

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

2009-06-07T15:47:00.002-05:00

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

2009-04-09T15:41:00.003-05:00

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!!!

2009-04-08T12:00:00.003-05:00

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

2009-04-02T15:18:00.002-05:00

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

2009-03-31T15:45:00.000-05:00

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

2009-03-24T20:46:00.000-05:00

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

2009-03-20T15:50:00.003-05:00

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

2009-03-09T20:58:00.003-05:00

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

2009-02-28T14:45:00.005-06:00

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

2009-02-27T07:21:00.002-06:00

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...

2009-02-20T15:31:00.003-06:00

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

2009-02-16T20:13:00.001-06:00

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

2009-02-14T14:10:00.003-06:00

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

2009-02-11T07:23:00.002-06:00

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

2009-01-29T17:51:00.002-06:00

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

2009-01-28T16:41:00.002-06:00

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

2009-01-09T18:34:00.002-06:00

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

2009-01-08T19:57:00.003-06:00

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)

2009-01-07T16:37:00.002-06:00

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

2009-01-06T20:44:00.003-06:00

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.

Not What I Wanted To Hear

2008-12-31T14:03:00.002-06:00

I don't know about you but I am not happy about the results we got back from my labs. I have been feeling good except those few stomach aches ( I now remember why I don't like them). I have been enjoying my Christmas presents and am enjoying the time I get to spend with my family (even though I miss my mom, stepdad, and little brother). I can't wait for school to get back in so that I can see my friends. I hope everyone has a Happy New Year!

Dec 29th Lab Results

2008-12-31T10:51:00.002-06:00

I got a call today from Dr. Zapata's office with the results from Ashlyne's blood work this week. There has been some changes, he is not too concerned yet but will be having her blood work drawn weekly again to see if things level out. Ashlyne's sed rates went up 8 points to 12, and one of the liver tox levels (apm I think, I was driving so could not write things down) was also up. The 6mp (immunosuppressant) can cause liver and kidney tox issues so we will have to monitor this. Ashlyne has had a few pain spells since Christmas but not a lot, so we will just have to wait and see. Continue to pray that these are not issues arising from the disease and just little blips in the road. Ashlyne has been coming down from 40mg of prednisone and last time we came off the prednisone her pain issues started up again as she went down. Let's hope that is not the case again and she is continuing to have healing. Also pray for the prednisone side affects of acne, Ash is not happy about this little issue added to her face.

Happy New Year!!

Wendy

A Look into Ashlyne's heart

2008-12-27T11:08:00.004-06:00

Below is a note Ashlyne wrote to David Garrard with the Jacksonville Jaguars. I just had to share with you all her amazing little heart.

Merry Christmas David Garrard,

My name is Ashlyne Meseure and I live in Kearney, NE. I have Crohns disease also and was diagnosed this year. It has been really tough but I am getting much better and am almost in a stable state. I really appreciate the football that you and Maurice signed and sent me through Roy Stutz at UNK. It was very nice of you and made me feel really special. I think it is awesome what you do for the CCFA and I will definitely be rooting for you to win your last game. I will also be checking your blog. Here is my blog that you can check weekly to see how I am doing www.crohnskidsnebraska.com. I hope you had a Merry Christmas.

I really like the verse you have on your site. My mom and I hung up a whole bunch of bible verses on my last hospital stay and that was one of the verses we hung up. Crohns has really changed my life, it brought me closer to Jesus Christ and it has changed my diet and my life habits. I have gotten closer to my family and friends too. This disease has changed my life in many wonderful ways and I hope it changed your life too.

Your Friend,
Ashlyne Meseure

Merry Christmas

2008-12-25T11:12:00.003-06:00

Merry Christmas! In the left picture are Gluten free aebleskivers that my mom made. Aebleskivers are a Danish Dish, they are a hollow round pancake that you fill with jelly or syrup. We have them every year at Christmas time. In the right picture I am holding a football that was signed by David Garrard and Maurice Jones-Drew, they are football players on the Jacksonville Jaguars. David has Crohns and for every touchdown he throws Centrocor Inc. donates $10,000 to CCFA. I think that is awesome! I want to thank the Stutz Family for getting me the football. I hope everyone is having as good of a Holiday as me.

Sorry

2008-12-22T09:49:00.002-06:00

Sorry everyone its been a while since I posted on my blog. IT has been pretty busy around here. My grandparents are visiting from Phoeniox and then trying to figure out my diet for the holidays. well I'm sure you all have heard that I am doing much better and that there is little to no inflamation. I am not very happy that they didn't change my diet at all but I guess it's better that I am feeling good. Keep checking on my blog to see how the holidays go on this new diet.

PRAISES!!!!

2008-12-17T11:24:00.002-06:00

I just got off the phone with the doctors office. Ashlyne's labs yesterday were all very good. One of the areas of stricture has resolved and there appears to be no thickening of the intestinal wall, the second area, terminal illeum, has gone from an 8.2 something to 1.4 in thickness a major improvement!!!

Thank you, thank you, thank you for all your prayer I do believe that is all part of the success of her healing. Dr Z does not want to change any other parts of her treatment at this time in regards to medication and diet restrictions, other than starting to take her down off the prednisone.

Matthew 18:20:20 "For where two or three gather together as my followers, I am there among them.”

Keep praying!!!

Wendy

Dec 16th Visit to Children's

2008-12-16T20:31:00.002-06:00

This was taken today, Samuel was such a good boy during Ashlyne's Dr visit. He has a sinus infection and on antibiotic but we did not want to risk anything so we had him wear a mask.

From Ashlyne's clinical examination and her lab work from the last three weeks she appears to be improving very well. Dr Z said until he got the results from the ultrasound today he could not conclusively say there was improvement but he was very optimistic. We had the ultrasound after her visit with Dr Z, the radiologiest who did her MRI in November came in and assisted in the ultrasound, his initial feelings were that there was much improvement and he did not see the thickening of the intestine like what was present in November. He had to do the full comparative and was to call Dr Z with his findings before we know for sure.

Dr Z is starting to take Ashlyne down on her prednisone, 5 mg every 5 days until we reach 20 mg, then we will do some more lab work and see. We also had blood work today at Children's, we came home with a "hat" to do a stool sample also. Dr Z wants to speak with Dr Attard and Septer with all the results and look at if and how they will or can modify her elemental liquid diet. We may or may not have any changes at this time. Ashlyne did not like that idea at all. We will just have to wait and see.

We will update more tomorrow once we hear back from Dr Zapata. Again we thank everyone for their continued prayer and support.

It's the Most Wonderful Time of the Year

2008-12-08T20:55:00.003-06:00

Merry Christmas! It's time to do all the Christmas cooking. HOORAY! (not). Tonight we decorated Christmas cookies. It was hard but its a family tradition and I didn't want to miss out in the family fun. I don't get to eat any special cookies but I made so me pretty special ones for different people. It was fun and it got easier. Mom is able to make my favorite cookies gluten free so she is going to work on those this week. By the way please be praying for her because next week she is going to have a colonscopy and I just want God to be there with her and besides it's her turn to feel what its like to be in the hot spot. Thank you so much for all the prayers. I am feeling much better and can't wait to get to eat as much as I want. Make sure you check on my blog next week to find out how my doctors appointment goes.

This Week's Labs

2008-12-05T15:10:00.002-06:00

Just got off the phone with Dr Zapata's nurse and Ashlyne's labs for this week which are her chemical level tests all came back within normal ranges. Next week Dr Z is ordering CBC, Sed Rates and 6mp again. Ashlyne has been feeling well, she has not had any pain spells or bloody stools. This is wonderful news. Other than her hating the swelling from the prednisone her spirits are great, she manages her diet so well.

I could not be more proud of her. She just amazes me each and every day. This week driving to school she expressed to me that she was glad she has Crohn's, I asked why, she said it has brought her closer to God and made her dependant on Him. She doesn't really want to be healed cause she does not want to loose this. WOW! What a profound statement, so spiritaully mature and wise. I said if she was healed she could give all the praises to God and she said she knows but thinks having Crohn's is ok. My heart could not be more filled hearing the words she is relying on God and how much she values this relationship she has built with God.

Wendy

2008-12-02T06:29:00.002-06:00

Hi! This is Ashlyne and I think I look like the stay-puff marshmallow man. Please do not laugh at me but the stupid prednisone is not being my friend at all! :-(

New Glasses, New Hair Doo

2008-12-01T22:19:00.003-06:00

The week we got back from Children's this past month Ashlyne got new glasses and a new hair cut. Here she is in front or the Christmas Tree tonight with her beautiful smile.

Happy Thanksgiving

2008-11-29T10:07:00.002-06:00

On Wednesday we recieved Ashlyne's lab work back from Tuesday and her CBC, Sed Rates and Liver Tox levels were all still very good. This is very good news. Ashlyne will go in on Monday, Dec 1st for her weekly labs plus they are going to run her 6mp test. 6mp is her immumosuppressant drug and they will see how those levels. We are just about 2 1/2 weeks from her next visit when we see the dr and they do an ultrasound to compare to her MRI that Ashlyne had when she was in the hospital in November.

We are thankful for all of you who care for Ashlyne, pray for her and encourage her. We would not be able to do this without all of you.

Wendy

Praises - Lab Results & more

2008-11-19T19:37:00.003-06:00

We got the results of last weeks blood work, Ashlyne's sed rates are good, her CBC, blood count is good and her liver tox levels were within normal range.
Ashlyne continues to not have any pain.
Tonight is the last night for two weeks to have to get up and take meds at 1:30am, both Ashlyne and I are thrilled about this one.
Our pharmacist is a compound pharmacist and he was able to make her new antiobiotic that we start tomorrow into a syrup so we do not have to give her injections of the medication. (Mom is really glad about this one)
Ashlyne's grades continue to be A's, she has caught up with all her assignments and classes from missing 5 1/2 days of school.
Ashlyne's spirits over all is very good.

Items to continue to pray about:

Calm Ashlyne's appetite, prednisone makes anyone hungry, she is on high levels and the last couple days has been wanting more food than she is allowed.

Protect Ashlyne from any teasing at school, her diet makes her different and her checks are really puffy, middle school kids can be mean. So far no one has given her trouble which is also a praise.

That this diet and medication regime will calm the inflammation and stricture areas before we return to Omaha on Dec 16th.

That Ashlyne can have some diet restrictions lifted and be able to have more foods by Christmas.

Pray for both of Ashlyne's families as we face the holidays and increased medical expenses. Pray that the insurance will authorize payment of Ashlyne's liquid supplement.

Thank you for continued support and prayers and encouragement.

Wendy

It's Ashlyne!

2008-11-17T20:09:00.005-06:00

So far I have been doing good on my diet. I have not been doing bad emotionally until tonight I lost it. I couldn't hold it in. It wasn't as much as the food as not being able to eat a whole entire meal with my family. All I really get is a piece of chicken or meat and a Vital Jr. I don't even get to eat the same thing as them sometimes. Well, I am feeling much better but I haven't pooped since like Friday so I have to drink Milk of Magnisia. YUCK! Keep checking up on my blog to see how my new diet is working.

It's Ashlyne!

2008-11-17T20:09:00.001-06:00

11/16/08 - 1 week down

2008-11-16T20:13:00.003-06:00

Ashlyne has been home almost a week now and has been on the new diet just a week yesterday. I could not be more pleased with her response and cooperation with all the limitations. Calorie and gram counting and trying to give her some what of a variety continues to a challenge each day, but she has not complained. Ashlyne has felt well and has had little to no pain. Thank you for your continued prayers.

Wendy

11/11/08 Status

2008-11-11T20:12:00.002-06:00

Yesterday morning started out not too good, Ashlyne started feeling poorly Sunday afternoon and she was still feeling "blecky" in the monring. Dr Septer was not wanting to release her until she started eating and drinking, which she was not doing Monday morning. Right around noon she started taking on fluids and did eat her hamburger patty. At 1:30 Dr Septer decided to release Ashlyne, he felt her "blecky" feeling could be related to a cold or flu she might be fighting and not complications with her Crohn's.

We left Omaha around 3:30 in rain and cold. We arrived home safely about 7:00pm Monday night. Ashlyne did finally pass her test camera pill as it finally dissolved enough to get past her strictures. The plan is as follows:

Remain on all her current meds with 6MP at 50mg a day, and her prednisone at 40mg. They have also decided to keep her on flagyl for 9 more days then start alternating flagyl and gentimiacin in 2 week intervals. The other meds she takes have not changed.

She will drink 5 cans of Vital Jr (40 oz) a day and an additional 20 ounces of water a day.
Ashlyne will have approx 800 calories a day of high protein and fat with a little carbs.
We will do this medication treatment along with the diet for 5 weeks, we return to Children's on Dec 16th for a doctor visit and an ultrasound. The new ultrasound and the MRI we took last Thursday will be compared. If she has improvement and depending on how much the Doctors will decide whether to keep her on the same treatment longer or start to alter it. If there is no improvement then remicade will most like be the next step of treatment.

Specifically pray that Ashlyne will have the will power and tolerance for this very restrictive diet. That her body will repsond to the treatment and medications and that the inflammation will go done. Pray that the high doses of 6MP will not create liver damage at this above normal levels. Pray that the prednisone will not have any further side affects than we currently deal with. Pray that she will remain healthy, she will not catch any colds or flu bugs, these can set her back. Pray that kids at school will not make a big deal about her new diet and she does not stand out. Pray that Ashlyne will remain encouraged and focused on the fact that this is just a short time in the big picture of things and the diet will not be forever.

I am so proud of how brave Ashlyne has been thru this all and tried very hard to deal with this diet. The nurses loved her at Children's and I am so pleased to hear that. Thank you all for your prayers and support this past week. We felt God's loving presence and I know that is what got me thru the past few days.

Wendy

Hooray!!!

2008-11-09T21:01:00.002-06:00

Finally I get to go home tomorrow. I am very excited because I have been getting very bored lately. I hope this new diet works better and will help me get better. I don't totally like this diet but if it will get me to fealing better I am okay with it. All I need to do is look at it like its and only eight weeks out of my whole life. Keep checking my blog to see how the diet is going.

11/9/08- Update

2008-11-09T11:50:00.002-06:00

Ashlyne had a good night and was able to get sleep despite the prednisone at 10:00pm. Dr Attard came in this morning. Ashlyne's pain has improved dramatically at examination, she is responding fine to liquid supplements. Dr Attard believes she will be released tomorrow after Dr Zapata examines her. We will do as follows:
60% liquid elemental supplemental
40% high fat, high protein, no fiber diet (solid food)
in about 4 weeks return for ultrasound comparision and sympton comparison
Keep 6mp at 50mg a day
Keep prednisone at 40mg a day
Stay on flagyl and then another antibiotic
Other meds remain the same
weekly liver tox, cbc and sed rates checks thru blood tests

The diet will be a challenge for Ashlyne in total with the liquid supplement she needs to intake 55-60 ounces of fluids and will only have about 830 calories in actual food.

Thank you for your prayers.

Wendy

A Cold Dreary Saturday

2008-11-08T14:32:00.002-06:00

Good Afternoon! I just woke up from a nap. It was awsome, I have not been sleeping well so this nap really helped. Last night I had some friends form Kearney visit me because they were in tow n for a dance competition. I am really glad that they took the time to see me, it makes me feel really special(especially because they brought me a giant tiger stuffed animal). I am really feeling better but am upset that the tester camera pill got stuck. They also had to take out my old IV and give me a new one which I was not happy about at all. I miss all my friends and family but am happy that I get closer to going home by the minute. I just need to stay positive and I will make it throught this. Thanks for the prayer. So keep checking up for a daily progress chart thingy;-).

11/8/08 Update

2008-11-08T11:31:00.002-06:00

As of 7:30 this morning Ashlyne had not passed the test pill so we went down for xrays to see where it is at. To our disappointment it is stuck in her colon at the first stricture site, the inflammation is so great that it can not pass. So this means no camera pill on Monday, Dr Attard is not sure what he wants to do now for sure. He wanted to talk to Dr Z and Dr Septer, he will see us Monday. He wants Ashlyne to go to 60% liquid diet and 40% fat and protien now too. So she will get 830 caloreis a day by food, protein and fats basically, no fruit, veggies, or fiber and very limited carbs about 200 calories at most (this would be about 8 tator tots or 1/2 a medium baked potato, the other 1240 calories will be by liquid supplements. The food department messed up and did not get us liquid supplements until 11:30 today, Ash was pretty hungry. The liquid supplement will be about 32-36 ounces a day. She has to take in 60 total ounces of fluids a day so besides her supplement she will need to drink that equal amount in water. Ashlyne's IV also collapsed this morning so we had to put in a new one, that did not go over very well with her. Her hands are very bruised and sore, the first day on the first attempt it went thru the vein and bubbled up a big blood pocket and that is still swollen, her right hand has had two IV's now and is just plain sore. Please pray for Ashlyne's spirits, the limited diet makes her upset, I keep redirecting her focus to the fact that this is just a season and once the inflammation can get into control she will not have to stay on this restrictive of a diet. The diet is a better answer right now than doing remicade, Dr Attard wants to try to keep her off that as long as possible due to her age and the side effects. The saga continues and we are just taking each day one at a time.

Wendy

From Ashlyne 11/7/08

2008-11-07T13:52:00.002-06:00

Hey, its me again! Today we haven't done much. We have been watching movies we went and played Wii in the play room and I got to take a bath this morning. We talked to the nutritionist this morning and are going to start trying different milky things. I hope they don't taste to bad. I a kind of upset about the new diet but thats just one of the many new things I am going to have to live with. Thanks everyone who has been praying for me and keep checking my blog.

Ashlyne

Surrounded by God's Word

2008-11-07T13:49:00.003-06:00

Ashlyne has been making pictures and putting them up around her room and on her door. We also selected a few scriptures that we have hanging up around the room and on her door. These are the verses we selected this time.
Daniel 3:17
John 14:6
James 1:2
Romans 12:12
Phillipians 4:6
Please pray these verses with us.

Wendy

11/7/08 11:00 am Update

2008-11-07T10:57:00.002-06:00

Hello from Children's

Dr Attard was in this morning, below is the plan and what is happening so far. Ashlyne did not rest well last night, she did not get to take her prednisone until late yesterday so she was totally wound up. Ashlyne got to eat last night she was thrilled, the down side pain started again this morning.

Waiting for test pill to pass
Started intravenous prednisone (increasing her dose from 20mg to 40mg)
Taking her 6MP back up to 50mg a day (will have to monitor liver tox weekly as this high dose of 6MP is creating toxic liver levels on Ash)
She is taking Flagyl - they feel there maybe increased bacteria flora levels in her gut
Change her diet to 60% high protein high fat, no fiber, low carb diet, the rest of her nutrients will come from liquid supplement drinks, limited carbs
start her on miralax (laxative to keep things flowing)
Take camera pill Monday
MRI shows 2 areas of stricture but they do feel it is tissue inflammation stricture and not thickening hard stricture
Over the weekend we will experiment with the different drink supplements and work with dietician on Ashlyne's intake
We will do this treatment of increased meds and diet restriction for 4-8 weeks to get healing.
In 4 weeks we will have an ultrasound to measure whether inflammation has changed. Depending on those findings and her symptoms the next step will be decided.
Dr Attard is happy that no surgery is needed at this time. He is reluctant to put her on Remicade yet, he wants to try to achieve control without having to be so aggressive.
If we can attain control thru diet and meds we will then try to go off prednisone and diet. If we do not gain control then we will have to revert to Remigade.
We will be here thru at least Monday and possibly Tuesday the way it looks now.

Test Camera Pill

2008-11-06T19:28:00.001-06:00

This is the test camera pill that Ash had to take tonight at 7pm, she did great getting it down other than spitting OJ all over herself.

It's Me Again

2008-11-06T17:19:00.004-06:00

Hi, Its Ashlyne! Today has been kind of a lazy day. We spent practically all morning in my room. We went for a walk around and went to the play room. This after noon they put in my IV and I had to drink contrast for the MRI. We did the MRI which was easy. I have been feeling fine and feel spoiled I am really tired and my hands are sore. I was dehydrated by the time they did my blood test and IV so they hurt but I didn't cry. Luckly they had this lotion that numbs your hand and so we used that for my IV so it didn't hurt. Keep posted to hear more about my second stay at the Children's Hospital.

11/6/08 3:30

2008-11-06T15:22:00.002-06:00

We are getting into the MRI early in about 5 minutes. The contrast has gone down well for Ash. Dr Attards "fellow" just came in and dropped off her test capsule. We will take that at 7pm tonight, if it does not pass by Saturday at 7am, they will take films to see if it is lodged. If it does pass then she can take the real camera pill. She will be hooked up to electrode type sensors on her chest and tummy and they will monitor her. The MRI will get read tomorrow.

11/6/08 11:00

2008-11-06T11:03:00.002-06:00

Ashlyne's MRI is at 4:00 today.
IV in about 1:00
Ash will start drinking contrast for MRI around 1:30.
Prob won't do camera pill until tomorrow now cause MRI is so late in day.
She has had blood drawn three times today already

11/6/08 Update 9:00 am

2008-11-06T09:11:00.002-06:00

Dr Attard was in this morning he is Dr Zapata's associate. I think he has more Crohn's patients the way it sounds. There are about 12 different options on the table right now. Her x-rays from last night do show two strictures but they are not totally closed, they are trying to determine whether they are soft tissue inflammation strictures or hard constricted scar tissue. Depending on what they are determined will depend on route of tx. They are ordering more blood work, looking for bacteria's, and some other big word levels. They are going to have her swallow a camera pill today also to see whats going on that way and they have ordered the MRI. The MRI could be our tough one to fit in. She is still not on an IV, but no food either.
Wendy

November 5- Trip to Children's

2008-11-05T21:28:00.002-06:00

Over the last few days Ashlyne has had increased pain. On Monday Dr Z decided that she will need to start Remicade, she was scheduled for Nov 11th for her first infusion. Today Ashlyne came home from school around 11 because she was in so much pain. Dr Z made the decision to have Ashlyne admitted tonight. We drove to Omaha and got here around 7pm. The plan is to run labs tonight, we have had xrays already and tomorrow the radiologist and Dr Z are going to decide whether Ashlyne has another CT scan or an MRI. Ashlyne's pain levels have been at 8-10, where as this summer she was at zero and an occasional 4. Tonight Ashlyne gets to have clear liquids until 2am, then nothing by mouth for the duration. No IV at this point until tomorrow. Please keep Ash in your prayers and for the Doctors to discern the situation and make wise decisions regarding her care. For Chuck as he holds down the fort again in Kearney.
Wendy

Lab updates

2008-10-27T20:46:00.002-05:00

Dr. Z thinks she is constipated from them putting her on the low fiber diet last week when we were in Omaha. She is now on Milk of Mag. too to loosen things up. Her cold seems to be doing pretty good, just stuffy and runny nose. The pain has gone from a +10 back to a 4, on a scale of 1-10.

Dr Z called today and her 6mp levels in her blood stream are off the charts, UGH. He has taken her off the drug for 5 days and lessened her dose, just 8 weeks ago we raised the dose cause it was not building up in her system. He is still thinking remigade, will wait a week or so to see if her blood levels settle down. Her other labs were all within normal range or acceptable range for her condition.

Keep praying for stability and healing.
Thank you,
Chuck and Wendy

Update on Support group Meeting

2008-10-26T17:30:00.002-05:00

All,

We just wanted to let you all know that Ashlyne has gotten very ill and we will need to cancel the meeting tonight. We look forward to meeting you all soon. Sorry for any inconvenience we may have caused. We will reschedule at a later date. Please watch for new time and date.

Chuck Kreis

Trying Again- Central NE Crohs and UC Support Group

2008-10-12T14:15:00.002-05:00

One of these days we are going to get this kicked off. I believe there is a need and great value in creating this group. Just the last few weeks alone have proven that to me again and again. I know Ashlyne needs others to talk to about this and I have been blessed by mom's calling me and writing me and encouraging me.

Mark you Calendar:

Sunday, October 26th at 6:30 pm
4204 Prairie Hills Rd
308-237-5557

From 2nd Avenue:
West on 39th (Sunmart)
Stay on 39th to Fair Acres (2nd street past signal at 11th)
Turn right on Fair Acres take to bottom of hill to 4 way stop
Turn right on Palamino go one block
Turn right on Prairie Hills Rd, top of the hill on the right.

Please let us know if you can make it. If you know others with Crohn's or UC or digestive issues with food restrictions please invite them and direct them to this blog.

We do look forward to meeting everyone!

Wendy and Ashlyne

Review

2008-10-08T17:10:00.003-05:00

Sunday: Got a call from Dr. Z.

Monday: Went to Omaha's Children's Hospital and got hooked up to an IV.

Tuesday: Got woken up at 5:00 and got moved into isolation because my siblings had chicken pox and I had been around them. I also had to take had to drink liquid barium and had 2 blood tests.

Tuesday Night: I got released from the hospital and got to stay in my grandma's hotel room.

I want to thank everyone for praying for me. It really helped. I also want to thank the Kaylors for always thinking of me and praying for me!

Ashlyne Update

2008-10-07T21:20:00.000-05:00

Dear All,

Praises and thanks to all the prayers, Dr Z came in tonight about 6:40 with her test results from the last two days and there is no stricture or blockage. Her labs are still not where they were or where he wants them to be. He shared Ashlynes records and test results with some of his collegues and they also recommend that we do little to nothing at this time. They are putting her back on Prednisone and prilosec and adding a probiotic to her current meds. The hopes are that another month plus of prednisone will give her immunosuppresant drug yet more time to get built up in her system. He acknowledges the roller coaster ride right now and does not want to be overly agressive with the biological drugs, he really wants the level 2 drug 6mp to work. She has a more restricted diet which is hard to imagine, she must remain gluten and dairy free and keep it very low fiber, (not sure what that means since she has no wheat in her diet anyways) no popcorn, nuts, or fruit or foods with seeds, no more experimenting with foods. She needs to remain well hydrated and rested.

Dr Z will monitor her closely the next few days and weeks. We were released tonight about 8:45pm. We are staying at my moms hotel to get rest tonight and will drive back to Kearney tomorrow after we wake, we did not get much sleep last night and are looking forward to a full nights sleep. We will run new labs next Tuesday unless she gets ill with severe pain, fever or vomitting. We return to Omaha in two weeks and will do labs then too. As relieved as we are for this great blessing of no blockage we are still requesting prayer for control of her Crohn's and more healing.

Thank you once again for all your support, prayers and love!

Fondly,

Chuck and Wendy Kreis

OW! ICK! NO!

2008-10-07T11:40:00.000-05:00

This is Ashlyne! Today has been horrible. I got moved into isolation at 5:30 this morning. I can't go anywhere! I was so mad I loved my room, It had a great room and I was comfortable but then they pretty much kicked me out of my room. After that they did a blood test and then they made me drink barium, bleck! then they made me do another blood test. If it comes back good I get to go back to my old room hooray!

Heading to Omaha

2008-10-05T18:32:00.001-05:00

This is Wendy:

I received a call this morning early from Ashlyne’s specialist in Omaha, her lab work is worsening and he wants her admitted into Children’s tomorrow. He is unsure of the route of treatment as yet, we will be doing a lot more tests and redoing tests, possible colonoscopy, CT, lower GI and then a possible MRI in addition to more blood work. She may have a stricture which is a blockage. He is putting her on IV steroids right away and then will plan route of treatment as we move thru the tests. Dr Z expects us to be in Omaha for at least 3-4 days at the minimum. I will be traveling with Ashlyne at this point. Chuck will remain home with the boys holding down the fort and trying to keep their lives as normal as possible.

Please pray that the doctors can find what is going on with her Crohn’s, that it won’t be a stricture. They will find a treatment that she will respond too. Give Ashlyne strength as she goes thru a gamut of tests she hates.
In Christ,

Wendy

Tough Week

2008-09-28T18:47:00.004-05:00

Last week I had a CT scan. I was not fun at all. I had to drink liquid barium. When we finally got in they had to give me an IV. They couldn't get it in my vain in my right arm so they had to take it out and put it in my left arm. When they injected the stuff that's supposed to make you feel warm, i didn't feel warm I just got a really bad pain in another section of my arm. The day after that I had to go to my normal doctor because they thought I had appendicitis. they had to take blood which actually made my cry(I was bruised from the day before) and I haven't cried during a blood test for about 2-3 months. For some reason after those appointments I felt much better. I have had no stomach aches or bad poops:). Just tonight I tried some pasta and it didn't turn out good I barely ate half of it and I got a stomach ache. I hope to fell better by next Christmas(keep posted to here why) and I feel am slowly getting better.

New Scheduled Gathering Date

2008-09-28T18:39:00.002-05:00

We would like to reschedule our gathering see the below information.

Sunday, October 12th
5:30pm
Location: TBD- see what the weather is doing by then.

We will do a potluck again with everyone bringing a main dish and a dessert or side dish to share. Please mark your calendar now and let us know if you can make it.

Wendy and Ashlyne
308-237-5557
ibdkids@charter.net

Picnic Cancellation

2008-09-24T13:04:00.002-05:00

Dear All,

We regretfully have to cancell the picnic on this Friday the 26th, Ashlyne has not been feeling very well and on top of it we have the chicken pox at our house even though Ashlyne's little brother was vaccinated. Dr. Z is not sure about the affects to Ashlyne and we do not want to risk exposing anyone of you since all have compromised immune systems. We get this rescheduled soon. Thanks for understanding.

Wendy Kreis

The Doctor

2008-09-16T19:18:00.006-05:00

Today I went to the doctor. I thought it was an OK trip. I have been having a little bit of pain since the appointment because it was a little flared up and he was pushing on it which did not feel good. I am to keep trying new foods but plan to stay away from cake for a while.(It made me sick.) I like my Dr. a lot but it is kinda strange(He likes poop.) He is very nice but has a really strong accent so my parents always have to repeat every thing. I hope to get better soon, so keep checking up on the blog because there will always be something for you to find out about.

Invite

2008-08-14T20:24:00.001-05:00

I thought we could have an informal gathering of parents, kids, adults who want to be apart or support a local IBD kids group.

When: Friday, September 26th 6:30pm
Where: Harmon Park by the playground
What: Potluck, every family bring a main dish and a side or dessert. Each family brings their own table settings and drinks.
RSVP : By September 20th

Blog Spot

2008-08-14T07:05:00.001-05:00

I want to thank Jen Ingersoll very much for jazzing up my blog, I LOVE IT! Jen has Celiac so she totally understands food and tummy issues. Her little girl also has celiac.

My Story Continued

2008-08-13T16:43:00.000-05:00

You would not believe what I have been through in the last couple of monthes. I have been through a procedure I have been through so many blood tests I have lost track, I have had to change my diet almost miss the last day of school and almost my whole life style all because of Crohns disease. it all started last November when I started having bad stomach aches and really wet stoles. We went to the Dr. and they said it was just a virus and not to worry about it.In February we took me off of dairy and i improved a little but not much so we went to the dr. again but told them I had a skin condition called muluscum contagious that should have gone away but never did and still said nothing was wrong. So finally in April we switched Dr said something definitely was up and got me an appointment in Omaha at the Children's Hospital with a specialist. My dr told me to stay on the gluten free diet witch I had just started the week before. When we went in to see the specialist he said he wanted to get inside me and see what was up. So we got scheduled for an endescopy and biopsy the very next week which happened to be the very last week of school. So on tuesday we went up to Omaha and I had to drink Liquid chalk which made me puke. So we called the drs office and they told us about another drink and that one went dowm and stayed down. The next day I couldn't eat anything after eight o'clock. So I was starving! We went in at two o'clock and got my room and I got to pick a movie to watch. Not even Half way through the movie I want in and they put me to sleep and before I knew it I was being asked if I wanted any thing to drink. About 30 min. later I was back in my room and the dr was telling us I had Crohns Disease and he could tell because I had soarse all the way from my mouth all the way out the other end. I was very upset but now I have learned to live with it and I have gotten used to the diet but now the dr is stating to let we off slowly so I am very excited.

Living with IBD or Crohn's Disease

2008-08-06T08:43:00.000-05:00

Welcome to my blog!! My name is Ashlyne and I have been recently diagnosed with Crohn's Disease. Please join me on my blog and feel free to leave your comments as I share with you my journey. We can support one another and encourage one another here in this safe place.