Happy Thanksgiving

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

• 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!

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!

11/16/08 - 1 week down

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

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!!!

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

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

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

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

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

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

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

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

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

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

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

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

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