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
Monday, October 27, 2008
Sunday, October 26, 2008
Update on Support group Meeting
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
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
Sunday, October 12, 2008
Trying Again- Central NE Crohs and UC Support Group
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
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
Wednesday, October 8, 2008
Review
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!
Tuesday, October 7, 2008
Ashlyne Update
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
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!
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!
Sunday, October 5, 2008
Heading to Omaha
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
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
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