11/11/08 Status

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