Merry Christmas!

I didn’t think I’d be posting medical info anymore, but these two websites contain helpful information for the disease management of GI issues.

The first is by a father, who was dedicated to much research to help his daughter…http://crohnsdad.com/

The second article caught my eye, please also note the section entitled, “Reverse Celiac Disease”…containing articles by Ashley’s doctor, Dr. Fassano…http://scdlifestyle.com/2012/12/success-story-how-julie-went-from-a-hospital-bed-to-healthy-and-drug-free/

As we are walking thru this Christmas season, I am thankful daily for what God has done in our family these last 2 years. During some of our worst days, a wise woman said to me, “I know you don’t believe this, but later you will miss the intimacy that you have with the Lord now.” I must admit, I didn’t see it at the time, but now completely agree. Although I would have never raised my hand for this trial, it has profoundly changed each one of us and I honestly don’t wish that it never happened. I hope you hear my heart in this. Obviously, I would never choose to see my child suffer, as we did for many heart breaking days, when I felt that I could not go on…BUT GOD…not only did we go on, but we have each grown in our walks with the Lord and relationships with each other in ways that I never knew were possible. We (and you:) have witnessed the miraculous hand of God at work, that reached down and rescued Ashley and we have experienced His healing in a very real physical, spiritual and emotional way. These last 2 years have forced us to cling to Christ and He has more than proven Himself trustworthy and faithful. We greatly rejoice, as the Lord has led us in battle to be overcomers and to walk in victory…both physically and spiritually!!!

Now, to the real reason of this post. As we continue to help people physically and spiritually thru GI illnesses, Ashley is confident that the Lord has and will continue to use her story for His glory to benefit others. She keeps asking, “when are we going to write the book?” Well, recently for a class, she (with a little help from dad) had the opportunity to start it! Her assignment was to write about an object that described her, but keep the reader guessing until the end, what object she was. The truths and the parallels that she used were profound. See how long it takes you to figure it out, but don’t miss the power in her words…

I am a place of hope…I can point people to the truth…I am unique and like no other…I have had many people visit me…I have saved people from danger…I have a solid foundation…I have weathered many storms…I have a keeper that takes care of me…I like to be near the ocean and the beach…I have a light in me!

Yes, a lighthouse! May you have the opportunity to slow down and sit at His feet this Christmas season and be filled with the true purpose of it all…to carry the light of Christ with you into dark places, as Jesus did when He entered our world over 2,000 years ago!

Merry Christmas to each of you who have soo faithfully prayed and encouraged us through it all:)

Lori

Happy Thanksgiving!

What are you thankful for? I am thankful for my life, family, friends and for each of you. Thank you for praying for me and walking through this trial with my family. It has been a long road, but God has been good.

Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus. -1 Thessalonians 5:16-18

We all have much to be thankful for,

Ashley

 

What’s left???

Many of you have emailed me since my last post and asked me what is left and how you can be praying for Ashley now. I am beyond grateful for the continued love, support and prayers!

First, I just want to say that, after what God has already done, what is left is certainly not too great for him to handle and we are trusting in His timing. But for those of you who have asked for specifics, I wanted to communicate them…

– We have been told by many dtrs, that in a traumatic injury/sickness, the brain is the last to heal. We are seeing that in Ashley’s recovery. Ashley continues to struggle with academics. Even though she has regained the ability to read and write, she is still really struggling with Math. She knew her multiplication and division tables in 4th grade, before she became sick, but is having a hard time regaining her ability in these and other math areas. She continues to go to brain training daily and is working really hard to move towards her grade level in math. I would love for you to pray for this because she sees in Cooper and her friends how far behind she is and this can be really discouraging to her at times.

– Her eyesight…Ashley continues to struggle with her vision and is still only able to read larger print. Much of her school work can’t be acquired in larger print, so I spend much time reading to her. Dr. Fassano believes that she suffered from peripheral neuropathy (a common celiac issue in the hands and feet) to the optic nerve endings. We continue to pray that this will resolve in time as well to help her regain grade level reading skills. This also tends to be discouraging in her classroom settings, as she often can’t read aloud or follow along due to her inability to read the words.

– Lastly, I would ask you to pray for her emotionally as we continue to process the trauma that she endured. We quickly realized that instead of having several large conversations, we really need to have many smaller ones, to allow her time to process. We have encouraged her that God has given her an amazing testimony that He will use in her life and others, so we need to not suppress anything, but bring her story to light. We have discussed together that she needs to own her story and not have her story own her, by not wanting to talk about the hard things, because God will use it all for His Glory.

God is faithful and has done “exceedingly more than we can ask or imagine” in Ashley and we are absolutely trusting the above areas to Him in His way and His timing.

Fun to post from YL’s Lake Champion this weekend, where we have the privelege once again to communicate the love of Jesus to high schoool friends. Ashley loves being at YL camp and it is a joy to watch her. Last weekend, Brittany and I had the opportunity to go to YL’s Rockbridge for fall weekend…Brittany’s first high school weekend and we took 5 Young Lives girls to hear the Gospel. It has been a busy, but rich fall!!!

Deeply grateful for you continuing to walk this journey with us:)

Lori
Psalm 18: 29 With your help I can advance against a troop; with my God I can scale a wall. 30 As for God, his way is perfect; the word of the LORD is flawless. He is a shield for all who take refuge in him. 31 For who is God besides the LORD? And who is the Rock except our God?

Finally, the results of the scope!!!

Friends, we serve a Mighty God who has done a Great Miracle in Ashley that each of you have had the privilege to witness! May this encourage your faith to trust and walk more closely with Him, as it has us!!!

This is the exact email that I received from the nurse today when I told her that I couldn’t wait any longer…

NORMAL!!!!!!!

We then spoke on the phone and she said that the scope results were completely normal, not just the villi, but enzymes and everything else that they check! The only hiccup was a liver number that has remained elevated for 2 years. They are not concerned about it, but will just continue to watch it. I was in tears and soo deeply grateful to our God that I can’t even put it into words. Just a year and a half ago, this girl wasn’t eating, talking or walking with a feeding tube and when she was scoped, they came out and said, “we don’t really need to wait for the biopsies, her stomach is a wreck”… BUT GOD!!! I immediately told the kids and we stopped what we were doing, got on our knees and thanked God for her life, her healing and His presence on this entire journey! We have walked alongside folks who have struggled with Celiac for 5, 10 years and never had a clean scope…this is truly a miracle from the hand of God!

What this means is that Ashley is a medical anomaly. Her blood work is elevated and continues to remain out of “normal range”, but with this scope, Dr. Fassano is declaring this to be Ashley Cramer’s normal and the numbers that we will use as our baseline from this point forward.  Fassano is a world renowned Celiac dtr and has only had this somewhat happen one other time…BUT GOD!!!

I haven’t told you much about the conference that we went to this summer, a post for another night. But I will tell you this, Ashley walked away from that conference declaring that she was healed and believing it in her heart. We affirmed her, encouraged her to walk out that conviction and even altered our diet to give her more freedom. Then we got the elevated blood work in September and I was devastated…for a couple of days, like Peter in Matt. 14, I took my eyes off of Jesus and felt like I was sinking again…not Ashley. Then, leading up to the scope, my main concern was the anesthesia and Ashley’s was the IV. We had taken our peace about the scope and weren’t really concerned about that part of the procedure. We were choosing to believe God’s report over the blood work’s report. I even told some close friends the day of the scope, that after this long battle, that day truly felt like a day of victory…BUT GOD…and now the medical report is in line with God’s report…NORMAL!!!!!!

God is all about redemption…redeeming us to Himself, redeeming the suffering and pain along this journey, redeeming our family’s faith, redeeming Ashley’s story by using it to help others physically, redeeming her testimony to use it for His Glory…truly “making beauty from ashes.”

A friend shared the below Psalm with me at a hard point on this journey when a group of women were praying for me…and finally, after feeling like we were continually sowing with tears, we are now reaping with songs of joy!!!

Deeply grateful for you remaining on this journey with us and on your knees for Ashley…he has heard your prayers, seen your tears and He has healed! (II Kings 20:5)

Lori

Psalm 126

¹ When the Lord restored the fortunes of^[a] Zion,
we were like those who dreamed.^[b]
2 Our mouths were filled with laughter,
our tongues with songs of joy.
Then it was said among the nations,
“The Lord has done great things for them.”
³ The Lord has done great things for us,
    and we are filled with joy.

⁴ Restore our fortunes,^[c] Lord,
like streams in the Negev.
⁵ Those who sow with tears
    will reap with songs of joy.
⁶ Those who go out weeping,
carrying seed to sow,
will return with songs of joy,
carrying sheaves with them.

Just had to tell you this…

This morning, when we picked up our puppy from another trainer, we found out that she had eaten a mushroom and spent the night in the emergency animal hospital! She even had to have her leg shaved because she got an IV!!!

Ashley and the puppy were really bonding today, as they were both lethargic and recovering!

Can you believe it? God does work in mysterious ways:)

Lori

Thanks for praying us thru the scope!

Today was a long day, but good day. We were up at 5:30 and off to the hospital. Ashley’s biggest concern was the IV and it went smoothly, still not her favorite thing in the world, but it was placed with great skill. We were incredibly pleased with the doctors and nurses at University of MD Medical Center and were very grateful for their care and concern for Ashley. The procedure went smoothly and there was nothing concerning to the naked eye, all looked normal! A far cry from the report of our last scope at CHOP! For confirmation, we will still have to wait for the results of the 9 biopsies they took, but we are incredibly confident of a good report of how the Lord has healed her stomach. These results will completely determine how we interrupt her blood work…either it is Ashley Cramer’s “normal” and a medical anomaly, or it will show us why the blood work continues to be out of range and elevated.

Your prayers were greatly felt, we all had such a peace. I prayer walked during the entire procedure and just felt soo lifted up and confident of the Lord’s hand upon her. The anesthesia went smoothly and we are beyond grateful that she work up in normal time and without any convulsions!!! She has been very tired today, dizzy, headache and sore throat and belly, but that is all to be expected. Please pray for a good nights sleep and a quick resolution of these symptoms!

I have to share with you how good God was to us on our trip. Last night, thanks to Univ. of MD’s discounted hotel rates for hospital patients, and my parent’s generosity, we stayed at a hotel right on the water in the Inner Harbor. Ashley loved it! When we got out the food I brought to cook on our George Foreman, the hotel staff let us plug in and eat out on the deck right on the water! Because of the season, deck dining wasn’t open, so we had a private meal next to the water! As Mike was getting an extension cord for the grill, one of the hotel workers asked us what we were doing. Mike briefly explained Ashley’s situation and why we were in MD and the worker said that he would pray for her! We then had such a blast just walking around the Inner Harbor and her favorite stop was the huge Barnes and Nobles that is down there. When we got back to the hotel room, we played several rounds of card games together and had a great time in prayer! Ashley’s comment was, “I never want this night to end and I never want tomorrow morning to come!” Well, even though morning came, God was in the midst of everything that happened!!!

Will definitely share the results with you when they come back.

Deeply grateful for you standing with us in prayer for protection over Ashley’s procedure today and a good report to come!

God is good,

Lori

 

arrive at hospital 6:15, scope at 7:15…grateful for your prayers!!!

Scope Wed. early AM

Friends,

We still don’t have the details of the exact time yet, but know that the scope will be early Wed. (probably around 6 am). Due to her past issues with anesthesia, they want her first thing in the morning. She has seemed fine about the procedure until tonight. When she found out that she was going to get an IV, she lost it and much emotion and memories came flooding back from the hospital. We have been wanting to talk to her since her memory came back in June about all that has happened to her and she hasn’t been interested. We’re praying that tonight’s conversation will set the stage for us to have more talks, unpacking the past.

Our main prayer is for her to experience the peace of God’s presence and that she would sense the Holy Spirit thick around her. We would ask for you to pray that there would be NO adverse effects from the anesthesia and that the procedure would go smoothly. We are believing that we will see evidence of God’s healing and that we will receive a good report.

Ashley, Mike and I will head up to Baltimore tomorrow afternoon. Please pray for a sweet time for us in the car and tomorrow evening.

Grateful for you interceding on Ashley’s behalf,

Lori

I keep singing this chorus over and over tonight…

“our God is Strong and Mighty, our God is Faithful…”

Upcoming appts

Dear Friends,

Well, we have our puppy and she is totally cute…when she’s not getting up all night to go to the bathroom and when she’s not chewing my table legs, couch and tearing our clothes!!! Seriously, I feel like I have a newborn all over again…but, Ashley is learning a ton…it’s not always easy and fun to be responsible…training takes work and patience…she’ll be an incredible blessing to someone in need one day and Ashley will have played a huge role in that! Feel free to pray that we will turn the corner soon with some of the puppy’s behavior…but seriously, she is incredibly cute:)

Wanting to ask you to lean in and join us in pray for Ashley’s upcoming appts. This Thursday, Oct. 4th, Ashley, Mike and I will head to University of Maryland for her appt with Dr. Fassano. It is incredible to think that he hasn’t seen her since she wore glasses 24/7 and wasn’t moving her left arm! What an amazing reminder of how far we have come! Ashley knows that she is headed to her yearly check-up and now knows the results of her bloodwork as well. It seemed that she almost forgot about having her blood drawn, but then she was recently pressing me for the results. I told her that she is strong and healthy and has come a long way; that we are not putting our faith in these numbers, but in what God has done in her. Fassano will examine her and we will have much discussion.

Then we will head up next Tues. night the 9th again, for her to be scoped early on the 10th. We don’t know the time yet, but will definitely tell you when we do, so you can be praying. We feel that it is necessary to visualize the healing that has occurred. We are believing in big things for her…that this blood work is “normal” for Ashley Cramer and that we will see God’s miracle of healing in how incredible her gut looks. Our main prayer request is for her reaction to the anesthesia…actually, that she would have NO reaction. The last time that she was put under, she took over 3 hrs to wake up instead of 45 min. and she convulsed as she woke up. Ashley is healthy, strong and a totally different person now than she was then, but we would still be grateful in you covering her in prayer for this procedure. Please remember, if you see her, that she doesn’t yet know about next week’s appt…thanks!

Today at our homeschool co-op Ashley shared briefly about being sick and what her favorite verse was that we constantly prayed over her…

Zephaniah 3:17(NIV)  The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing.

She shared that she prays this verse every night before she goes to bed.

We will continue to believe and walk in the Truth of this verse as we enter into these appointments.

Grateful for you continuing to lift up Ashley to our Heavenly Father who is Faithful,

Lori

Update- 9/18

Friends,

Many of you have been asking about the blood work results, so it’s easier to tell you all at the same time. To be completely honest…it was hard news! Not only did they not decrease this time, but 3 out of the 4 numbers that we are following actually increased over the summer! Our sweet nurse sensed my crushed spirit and even said how disappointed she was and that she waited 2 days to send them to us!

To be completely honest, I was devastated for about 5 days…I didn’t want to talk to anyone. Mike was out of town and I couldn’t bring myself to tell my kids, but believe me, they knew that something was up! I felt like I couldn’t breathe, speak or even think. I have always wanted to share with you the spiritual as well as the physical, and I believe this was another incredible opportunity for growth that the Lord gave me (even though I didn’t handle it well at first!) I needed to recognize the defeating lies that I was believing and get rid of them! As some dear friends pressed in and I got over my pity party, I felt the Lord say, “But God…” Nothing about Ashley has been “normal” since this all started 2 years ago, so why should I expect it to be now? I reminded myself of how Mighty He has shown Himself in her and thought of the promises in His Word that we have clung to to get us thru this journey and was finally able to rest in the Truth. A dear friend shared this verse with me…

Psalm 112:7

⁷ They will have no fear of bad news;
their hearts are steadfast, trusting in the Lord.

And that is where we are now…once again, trusting in Him who has proven Himself soo faithful in the past! Putting our hope in Him for her future!

So what’s next? We have prayerfully decided to return to University of Maryland to see Dr. Fassano. I can’t believe it has been a year since we have last been there. They are really wanting to see Ashley since the last time that we were there last Oct., she had sun glasses on 24/7, wasn’t moving her left arm and had no memory! We have also decided to re-scope her to get a visual on what is actually happening in her gut. She is strong, healthy and growing…we are believing that the scope will bring good news and this blood work is just what “normal” is for Ashley…after all, we continue to hear that her case is rare, so why wouldn’t her blood work be?

Her appt. is 10/4 and her scope is 10/10. I should tell you that the only thing we have told Ashley is that she has her annual check-up coming up. We just feel there is no reason to potentially provoke any anxiety in her, other than some struggles with school/learning, she has been doing incredibly well.

We are deeply grateful for you believing and standing with us that God will continue to display His powerful hand in Ashley’s life!!!

By the way, our puppy training has finally paid off and we are getting our service dog puppy next week! Ashley is ELATED! (Mike, not so much!) But she has worked hard for this and volunteered many hours, so I am very excited for her:)

Deeply grateful for you standing and believing with us for Ashley’s complete healing!

Lori

Psalm 33:20-22

²⁰ We wait in hope for the Lord;
he is our help and our shield.
²¹ In him our hearts rejoice,
for we trust in his holy name.
²² May your unfailing love be with us, Lord,
even as we put our hope in you.