Saturday, February 28, 2009

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.





Friday, February 27, 2009

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

Friday, February 20, 2009

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.

Monday, February 16, 2009

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.”

Saturday, February 14, 2009

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

Wednesday, February 11, 2009

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